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# ERN ReCONNET | European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases

ERN ReCONNET

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## Posts

- [📬 Our July 2026 Newsletter is now online!](https://reconnet.ern-net.eu/2026/07/31/📬-our-july-2026-newsletter-is-now-online/) - Before the summer break, we'd like to share the latest edition of the ERN ReCONNET Newsletter, bringing together the main achievements, activities and opportunities from across our Network over the past few months. 👉 Read it here: https://bit.ly/NewsJuly2026 In this edition you'll find: 🎓 Applications for our Accredited Course on Transition of Care, together with the
- [Applications Open: ERN ReCONNET Transition of Care Training 2026](https://reconnet.ern-net.eu/2026/07/20/applications-open-ern-reconnet-transition-of-care-training-2026/) - Don't miss the opportunity to join the ERN ReCONNET Transition of Care Accredited Training on rare and complex connective tissue diseases, an intensive international accredited programme taking place in Ljubljana, Slovenia, from 22–24 October 2026. Designed for physicians, nurses, psychologists and allied health professionals, the course offers a unique combination of expert lectures, interactive workshops,
- [ERN ReCONNET Transition of Care accredited course to be featured in EURORDIS webinar series](https://reconnet.ern-net.eu/2026/06/26/ern-reconnet-transition-of-care-accredited-course-to-be-featured-in-eurordis-webinar-series/) - The ERN ReCONNET's accredited Transition of Care Course will be presented during the EURORDIS Patient Partnership Webinar Series "Transition in Healthcare – Turning Recommendations into Practice", taking place on 1 July 2026. The webinar will showcase innovative initiatives developed across the ERNs to improve the transition from paediatric to adult healthcare for people living with
- [ERN ReCONNET's Transition of Care Framework Presented at EULAR 2026](https://reconnet.ern-net.eu/2026/06/18/ern-reconnets-transition-of-care-framework-presented-at-eular-2026/) - ERN ReCONNET Presents Transition of Care Framework at EULAR 2026 ERN ReCONNET is proud to announce that Dr. Mojca Zajc Avramovič (Ljubljana, Slovenia) delivered an oral presentation during the EULAR 2026 Congress in London on Friday, 5 June 2026, showcasing the work carried out by the ERN ReCONNET Transition of Care Task Force. The presentation,
- [ERN ReCONNET Wraps Up a Successful EULAR 2026 in London](https://reconnet.ern-net.eu/2026/06/18/ern-reconnet-wraps-up-a-successful-eular-2026-in-london/) - After four inspiring days at EULAR 2026 in London, ERN ReCONNET looks back on a highly successful congress filled with valuable exchanges, new connections, and opportunities for collaboration. Our team welcomed a large number of visitors to Booth O13, including both ERN ReCONNET members and many participants discovering our Network and our activities. We were
- [Read the latest ERN ReCONNET Newsletter n.31 — April 2026 Edition](https://reconnet.ern-net.eu/2026/05/04/read-the-lateste-ern-reconnet-newsletter-n-31-april-2026-edition/) - Spring is here, and so is a new chapter for ERN ReCONNET. The April 2026 newsletter captures a network in full motion — new alliances being forged, science moving forward, and our community growing stronger across Europe. Whether you are a clinician, researcher, patient, or advocate, this edition has something for you. 👉 Read the
- [ERN ReCONNET Launches EU-Wide Survey on Self-Management of Digital Ulcers in Systemic Sclerosis](https://reconnet.ern-net.eu/2025/12/01/ern-reconnet-launches-eu-wide-survey-on-self-management-of-digital-ulcers-in-systemic-sclerosis/) - ERN ReCONNET has just launched a new survey focused on the assessment and self-management of digital lesions (including digital ulcers) in people living with systemic sclerosis (SSc). Digital ulcers are a frequent and challenging complication of SSc, and understanding how patients manage these lesions in their daily lives is essential to improving care across Europe.
- [Newsletter n. 33 - Special issue call for ERN Affiliated Partners](https://reconnet.ern-net.eu/2026/04/21/23261/) - The European Commission has officially launched the 2026 Call for ERN Affiliated Partners—an important opportunity for healthcare providers across Europe to join the European Reference Network ecosystem. This special issue of the ERN ReCONNET newsletter highlights how affiliation can expand access to expertise, tools, and collaboration in the field of rare and complex diseases. Explore
- [The European Commission launches the 2026 Call for ERN Affiliated Partners](https://reconnet.ern-net.eu/2026/04/21/the-european-commission-launches-the-2026-call-for-ern-affiliated-partners/) - Rare and complex diseases affect millions of patients across Europe. Yet access to specialist expertise remains uneven. For healthcare providers in eligible countries, the 2026 Call launched by the European Commission for ERN Affiliated Partners represents a concrete opportunity to change that. What does it mean to be an ERN Affiliated Partner? Affiliated Partners
- [ERN flagship manuscript published in Orphanet Journal of Rare Diseases](https://reconnet.ern-net.eu/2026/04/16/ern-flagship-manuscript-published-in-orphanet-journal-of-rare-diseases/) - 27 to 36 million people in the EU live with a rare disease. For 8 years, European Reference Networks (ERNs) have been working to share knowledge and improve diagnosis and care for patients with rare and complex diseases. The ERN flagship manuscript has just been published in the Orphanet Journal of Rare Diseases, charting the journey
- [ERN ReCONNET joins IgG4-Related Disease Awareness Day](https://reconnet.ern-net.eu/2026/04/07/ern-reconnet-joins-igg4-related-disease-awareness-day/) - Today, ERN ReCONNET proudly joins the global community in recognizing IgG4-Related Disease (IgG4-RD) Awareness Day — an important occasion to shed light on a rare and often underdiagnosed condition. Did you know?It can take up to 10 years for a patient to receive a correct diagnosis of IgG4-Related Disease. IgG4-RD is a systemic fibroinflammatory disease
- [ERN ReCONNET launches Call for Expressions of Interest for Supporting Partners](https://reconnet.ern-net.eu/2026/04/07/23206/) - ERN ReCONNET launches Call for Expressions of Interest for Supporting Partners ERN ReCONNET is pleased to announce the launch of its Call for Expressions of Interest for Supporting Partners (SPs). This call is addressed to external stakeholders who are willing to actively contribute their expertise and bring added value to the Network’s activities on a
- [New Endorsed events](https://reconnet.ern-net.eu/2026/03/17/new-endorsed-events/) - ERN ReCONNET is pleased to announce the endorsement of two upcoming scientific meetings, further reinforcing its commitment to advancing knowledge, collaboration, and best practices in the field of rare and complex connective tissue diseases. The first endorsed event, the International Symposium on Sjögren’s Disease (ISSjD 2026), will be held from 29 September to 2 October
- [High-Level Conference on Patients’ rights on cross-border healthcare and the ERNs](https://reconnet.ern-net.eu/2026/03/17/high-level-conference-on-patients-rights-on-cross-border-healthcare-and-the-erns/) - The high-level conference “Patients’ rights on cross-border healthcare and the European Reference Networks” will take place on 26 March. This event will examine the progress made by the European Union in improving access to cross-border healthcare, while also addressing ongoing challenges related to awareness and effective use of these rights. Although EU citizens are entitled
- [ERN ReCONNET Special issue Newsletter - Rare Disease Day 2026](https://reconnet.ern-net.eu/2026/03/13/23080/) - Discover ERN ReCONNET’s latest special newsletter issue dedicated to Rare Disease Day, bringing together highlights and resources that support awareness and collaboration across the rare disease community. This edition features ERN ReCONNET’s illumination of the Leaning Tower of Pisa, as a visible sign of solidarity with people living with rare and complex connective tissue and
- [ERN ReCONNET illuminates the Leaning Tower of Pisa for Rare Disease Day](https://reconnet.ern-net.eu/2026/03/02/ern-reconnet-illuminates-the-leaning-tower-of-pisa-for-rare-disease-day/) - ERN ReCONNET marked Rare Disease Day with a powerful and symbolic initiative by illuminating the iconic Leaning Tower of Pisa, transforming one of Europe’s most recognisable monuments into a beacon of awareness and solidarity. Set against the night sky, the illuminated tower conveyed a message that extends beyond architecture. Its distinctive tilt reflects themes of
- [ERN ReCONNET participates in the Transition in Rare Diseases Workshop in Ghent](https://reconnet.ern-net.eu/2026/03/02/ern-reconnet-participates-in-the-transition-in-rare-diseases-workshop-in-ghent/) - ERN ReCONNET actively contributed to the Transition in Rare Diseases Workshop, held on 27–28 February 2026 in Ghent, Belgium. ERN ReCONNET was represented by Edoardo Marrani, Chiara Baldini, and Coralie Bouillot, who contributed to the cross-network dialogue and collaborative work toward improved transition care for people living with rare and complex connective tissue and
- [ERNs and Rare Diseases: Communication resources from DG SANTE](https://reconnet.ern-net.eu/2026/03/02/erns-and-rare-diseases-communication-resources-from-dg-sante/) - On the occasion of Rare Disease Day, DG SANTE has prepared a comprehensive communication package to support awareness and engagement around rare diseases and the ERNs. 🗓 The materials are available on the DG SANTE Rare Diseases and ERNs webpage: 🔗 https://bit.ly/40CfVJr ➡️ Please check the “Latest Updates” and “Highlights” sections. 📚 The
- [ERN ReCONNET shares patient stories collected through the JARDIN Joint Action](https://reconnet.ern-net.eu/2026/02/26/ern-reconnet-shares-patient-stories-collected-through-the-jardin-joint-action/) - During Rare Disease Month, ERN ReCONNET is pleased to highlight three powerful patient stories collected within the framework of the JARDIN Joint Action. These testimonies give voice to people living with rare and complex connective tissue and musculoskeletal diseases and underline the importance of coordinated, expert care across Europe. Through their personal journeys, Coralie, Olgaand Lotta,
- [ERN ReCONNET Newsletter n.31 - special issue now available](https://reconnet.ern-net.eu/2026/02/05/ern-reconnet-newsletter-n-31-special-issue-now-available/) - ERN ReCONNET has released Newsletter 31 – Special Issue, dedicated to the launch of the 2026 Webinar Calendar. This edition highlights the full webinar programme, key themes for 2026, and how to register for the free sessions, with all webinars also available on our YouTube channel. 👉 Read Newsletter 31 – Special Issue here: click
- [ERN ReCONNET launches the 2026 Webinar Calendar: a full year of free education for the rCTDs community](https://reconnet.ern-net.eu/2026/02/05/ern-reconnet-launches-the-2026-webinar-calendar-a-full-year-of-free-education-for-the-rctds-community/) - To mark the start of the new season, Prof. Maurizio Cutolo introduces the 2026 programme in a short video message, highlighting the educational vision behind the webinars and the importance of shared knowledge and patient partnership. Watch the video launch by Prof. Cutolo: "A new year of learning, collaboration, and shared expertise begins with the launch
- [New 2026 ERN ReCONNET endorsed events](https://reconnet.ern-net.eu/2026/01/08/new-2026-ern-reconnet-endorsed-events/) - ERN ReCONNET is pleased to announce the first series of scientific and educational events endorsed for 2026. These meetings reflect our continued commitment to fostering collaboration, advancing knowledge, and improving care for patients with rare and complex connective tissue diseases across Europe. The events endorsed to date are: 39th French Systemic Scleroderma Workshops: 4th –
- [📣 Register now for ECRD 2026! 📣](https://reconnet.ern-net.eu/2026/01/07/📣-register-now-for-ecrd-2026-📣/) - The registration for the European Conference on Rare Diseases & Orphan Drugs (ECRD 2026) is officially open! 🗓️ 🌍 ECRD is a leading event dedicated to the rare disease community, bringing together patients, clinicians, researchers, policymakers, and industry stakeholders to exchange knowledge and drive impact. ✨ Early-Bird Rates Available Make sure you register before 26
- [New ERN ReCONNET Newsletter n.30 is out!](https://reconnet.ern-net.eu/2025/12/19/new-ern-reconnet-newsletter-n-30-is-out/) - We are happy to share the latest ERN ReCONNET newsletter (December 2025 edition) with our community! This issue looks back at a very active year for the network and brings together updates, achievements, and perspectives from across ERN ReCONNET. The newsletter also features a special message to the entire ERN ReCONNET community, reflecting on our
- [ERN ReCONNET UCTD Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-uctd-disease-group-2025-update/) - The Undifferentiated Connective Tissue Disease (UCTD) Disease Group is pleased to welcome Chiara Tani, who, alongside Cristina Pamfil and ePAG Ramona Luciu, joins the coordination of the activities carried out by the UCTD Disease Group of ERN ReCONNET. Thanks to the valuable contributions of all participants, previously launched activities have been realized, and new milestones
- [ERN ReCONNET SSc Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-ssc-disease-group-2025-update/) - The year 2025 has been a period of significant productivity for the Systemic Sclerosis (SSc) Disease Group, marked by the completion of key projects and the launch of initiatives vital to clinical practice and research. The group actively contributed to the ERN ReCONNET online course through several specialized lessons: Calcinosis by Corrado Campochiaro and Aslıhan
- [ERN ReCONNET SjD Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-sjd-disease-group-2025-update/) - The year 2025 has been a period of significant momentum and consolidation for the Sjögren’s Disease (SjD) Group, during which projects launched progressed significantly thanks to dynamic collaboration and deep commitment. One of the central initiatives has been the European SjD's Symptoms Survey, developed in collaboration with Sjögren Europe, which focused on finalizing the questionnaire’s key
- [ERN ReCONNET SLE Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-sle-disease-group-2025-update/) - The year 2025 has been a period of significant progress for the Systemic Lupus Erythematosus (SLE) Disease Group, marked by new leadership under ad interim Disease Coordinators Marta Mosca and Matthias Schneider and the contribution of new ePAG advocate Zoe Karakikla-Mitsakou. The Group focused on both scientific advancement and the development of practical tools for
- [ERN ReCONNET RP Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-rp-disease-group-2025-update/) - The Relapsing Polychondritis (RP) Disease Group achieved significant progress in 2025, focusing on standardizing diagnosis and improving Patient-Reported Outcomes (PROMs). The RP Disease group worked on and partially finalised several projects: Red Flags for RP: A consensus was reached to define a series of clinical clues that 'flag' the diagnosis of RP. TogethERN ReCONNET Registry:
- [ERN ReCONNET MCTD Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-mctd-disease-group-2025-update/) - The year 2025 has been a period of significant progress for the Mixed Connective Tissue Disease (MCTD) Disease Group, marked by the completion of major educational and research milestones. A primary achievement this year was the finalization of the MCTD e-learning course, which features comprehensive modules covering patient experiences by Vera Guimarães and Magdalena Ciupera,
- [ERN ReCONNET IIM Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/19/ern-reconnet-iim-disease-group-2025-update/) - Throughout 2025, the ERN ReCONNET Idiopathic Inflammatory Myopathies (IIMs) Disease Group has achieved significant milestones in education, clinical research, and data standardization. A cornerstone of this year’s progress was the finalization of the IIM module for ERN ReCONNET accredited courses, which featured expert contributions on heart involvement by Louise Diederichsen, interstitial lung disease (ILD) by
- [ERN ReCONNET IgG4 Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/18/ern-reconnet-igg4-disease-group-2025-update/) - The main successes achieved include the launch of the initiative "ERN ReCONNET points to consider for the use of imaging in IgG4-RD". This project aims to create a position statement and expert consensus-based recommendations, utilizing a methodology that involves a literature review and a Delphi process. The group has also contributed to the preparation of
- [Welcome to our new SLE ePAG - Zoe](https://reconnet.ern-net.eu/2025/12/18/welcome-to-our-new-sle-epag-zoe/) - ERN ReCONNET is pleased to announce that Zoe Karakikla-Mitsakou, representing Lupus Europe, has joined ERN ReCONNET as an ePAG Advocate and will contribute her expertise and patient perspective. Living with lupus, antiphospholipid syndrome (APS), and other rare conditions herself, Zoe brings both lived and professional experience to her work. She believes collaboration across diseases is essential
- [ERN ReCONNET EDS Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/18/ern-reconnet-eds-disease-group-2025-update/) - Throughout 2025, the ERN ReCONNET Ehlers-Danlos Syndromes (EDS) Disease Group has significantly advanced its efforts to refine the diagnosis and management of generalized joint hypermobility (gJHM) and hypermobile EDS (hEDS). The Group’s primary objective is to develop a mature, practical approach for using gJHM as a clinical decision-making tool, focusing on achieving consensus across three
- [ERN ReCONNET APS Disease Group 2025 update](https://reconnet.ern-net.eu/2025/12/18/ern-reconnet-aps-disease-group-2025-update/) - The APS Disease Group continues to strengthen its activities and collaborative efforts across ERN ReCONNET, and we are pleased to share the latest developments as we move through 2025. One of the most exciting updates is the arrival of Jamy Scheerhoorn-Pullen, who joins us as the new ePAG representative for Antiphospholipid Syndrome. Jamy’s perspective and
- [DG SANTE Visit to the Coordination Team of ERN ReCONNET](https://reconnet.ern-net.eu/2025/12/18/dg-sante-visit-to-the-coordination-team-of-ern-reconnet/) - On September 29-30, we had the honour of hosting in Pisa the European Commission DG SANTE delegation, composed of Donata Meroni and Stefano Vettorazzi, for an in-depth visit focused on ERN ReCONNET. This visit provided a valuable opportunity to discuss with DG SANTE the key activities of ERN ReCONNET, including the development of clinical guidelines,
- [ERN ReCONNET Participates in High-Level Meeting on Rare Diseases](https://reconnet.ern-net.eu/2025/12/11/ern-reconnet-participates-in-high-level-meeting-on-rare-diseases/) - From 9 to 11 December 2025, ERN ReCONNET took part in the High-Level Meeting on Rare Diseases, a three-day event dedicated to strengthening Europe’s capacity for research and innovation in rare diseases and to consolidating the strategic contribution of the European Reference Networks (ERNs). The final day of the meeting was hosted at the European
- [Register now - ERN ReCONNET 2025 Sharing Good Practice Initiative](https://reconnet.ern-net.eu/2025/11/24/register-now-ern-reconnet-2025-sharing-good-practice-initiative/) - 📣 Registration Open for the 3rd ERN ReCONNET Sharing Good Practice Initiative The ERN ReCONNET Working Group on Research and Quality of Care is pleased to announce the third edition of the “Sharing Good Practice Initiative”, which will take place online on 1st December 2025 from 15:00 to 17:00 CET. Following the success of
- [Newly Elected ERN ReCONNET Disease Coordinators](https://reconnet.ern-net.eu/2025/11/17/announcement-of-the-newly-elected-ern-reconnet-disease-coordinators/) - ERN ReCONNET is pleased to announce the results of the recent elections for the network’s Disease Coordinators for the upcoming mandate. This election cycle recorded an exceptionally high level of participation from the Board of Network, reflecting the strong engagement and commitment of our Network. ERN ReCONNET extends its sincere appreciation to all those who
- [ERN ReCONNET Holds Transition Training Workshop in Ljubljana to Advance Curriculum Development for Transition of Care in Rheumatology](https://reconnet.ern-net.eu/2025/11/14/ern-reconnet-holds-transition-training-workshop-in-ljubljana-to-advance-curriculum-development-for-transition-of-care-in-rheumatology/) - Ljubljana, Slovenia – 13–14 November 2025 ERN ReCONNET successfully hosted a two-day Transition Training Workshop in Ljubljana dedicated to developing a shared European curriculum for improving the transition of care for adolescents and young adults living with rare and complex connective tissue and musculoskeletal diseases (rCTDs). The workshop, titled “Developing the ERN ReCONNET Curriculum for
- [  ERN ReCONNET Transition of care Survey](https://reconnet.ern-net.eu/2025/10/23/ern-reconnet-transition-survey-your-experience-can-help-many/) - Your Experience Can Help Improve Care Across Europe: participate now in the ERN ReCONNET Transition Survey ERN ReCONNET has launched a European-wide survey to better understand the transition process from paediatric to adult healthcare for people living with rare connective tissue diseases (rCTDs). Why this survey matters Transitioning from paediatric to adult care
- [Read the latest ERN ReCONNET Newsletter n. 29 - July edition](https://reconnet.ern-net.eu/2025/07/09/read-the-latest-ern-reconnet-newsletter-n-28-july-edition/) - 📢 The new ERN ReCONNET Newsletter n. 29 – JULY EDITION – is out! Dive into the latest updates, exciting developments, and upcoming initiatives from the ERN ReCONNET community. Here’s what you’ll find in this edition: 🔹 CPMS 2.0 Launch Webinar – A milestone for virtual cross-border collaboration in rare diseases🔹 Election of the New
- [ERN RECONNET – Newsletter N. 29 July edition](https://reconnet.ern-net.eu/2025/07/09/ern-reconnet-newsletter-n-29-july-edition/) - 📢 The new ERN ReCONNET Newsletter n. 29 – JULY EDITION – is out! Dive into the latest updates, exciting developments, and upcoming initiatives from the ERN ReCONNET community. Here’s what you’ll find in this edition: 🔹 CPMS 2.0 Launch Webinar – A milestone for virtual cross-border collaboration in rare diseases🔹 Election of the New
- [New ePAG Advocates for APS and IgG4](https://reconnet.ern-net.eu/2025/07/09/new-epag-advocates-for-aps-and-igg4/) - ERN ReCONNET is delighted to announce the addition of two new ePAG Advocates to its patient community: Alexander Patsalias and Jamy Scheerhoorn-Pullen. Jamy Scheerhoorn-Pullen steps in as the ePAG Advocate for Antiphospholipid Syndrome (APS). Jamy is an engaged member of the NVLE (Dutch Association for Patients with Rare Connective Tissue Diseases), focusing on patient participation, and also serves
- [ERN RECONNET – Newsletter N. 28: April edition](https://reconnet.ern-net.eu/2025/07/09/ern-reconnet-newsletter-n-28-april-edition/) - We’re excited to share with you the latest Newsletter number 28 with updates, achievements, and upcoming initiatives from across our network. Here's what you’ll find in this edition: 2nd ERN ReCONNET International Congress on Rare and Low-Prevalence Connective Tissue Diseases Launch of the New ERN ReCONNET Strategic Board ERN ReCONNET Transition of Care Task Force
- [Launch of the new CPMS 2.0 in ERN ReCONNET](https://reconnet.ern-net.eu/2025/07/07/newcpms2-0launch/) - On 26th June 2025, ERN ReCONNET hosted the launch webinar for the new CPMS 2.0, welcoming over 65 participants from across the Network. Prof. Marta Mosca opened the session by underlining the strategic role of the Clinical Patient Management System as a cornerstone for multidisciplinary and cross-border collaboration in the field of rare and complex
- [ERN ReCONNET @EULAR 2025](https://reconnet.ern-net.eu/2025/06/19/ern-reconnet-eular-2025/) - ERN ReCONNET at the 2025 EULAR Congress in Barcelona ERN ReCONNET was proud to participate in the 2025 edition of the EULAR Congress, which took place in Barcelona from June 11th to 14th. As one of the largest and most influential events in the field of rheumatology, the EULAR Congress offered a unique opportunity to
- [ERN ReCONNET Stories](https://reconnet.ern-net.eu/2025/04/03/ern-reconnet-stories/) - Are you a patient living with a rare or low-prevalence connective tissue disease? Tell your story! Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective tissue diseases (rCTDs) covered by the Network. The organisational patient’s pathway models will be developed following the RarERN Path methodology, developed by the
- [ERN ReCONNET SLE Survey](https://reconnet.ern-net.eu/2024/02/19/ern-reconnet-sle-survey/) - The deadline for the ERN ReCONNET RarERN Path Systemic Lupus Erythematous (SLE) survey is Feb. 29th, so there is still time to tell us YOUR story, moreover now the languages are 14 with with French and German. Among other initiatives, the ERN ReCONNET is working on the development of organisational patient’s pathway models for rare connective
- [New ERN ReCONNET Strategic Board](https://reconnet.ern-net.eu/2025/03/12/21430/) - The new ERN ReCONNET Strategic Board We are pleased to announce the composition of the new ERN ReCONNET Strategic Board. We extend our warmest congratulations to the new members of the Board for their commitment and look forward to their contributions in guiding the network towards continued excellence. The members of the new ERN ReCONNET
- [The European Parliament’s public health committee kicks off its survey on rare diseases](https://reconnet.ern-net.eu/2025/03/05/the-european-parliaments-public-health-committee-kicks-off-its-survey-on-rare-diseases/) - The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee on Public Health (SANT) in bringing a better understanding and detailed knowledge of the challenges of persons affected by rare diseases and views of persons working with or involved in rare diseases. The online survey can be filled in
- [New Booklet on ERNs published by the European Commission](https://reconnet.ern-net.eu/2025/02/26/new-booklet-on-erns-published-by-the-european-commission/) - Just a few days ahead of the 2025 Rare Disease Day and the European Commission has recently published a series of documents on Rare Diseases, including a new Booklet "European Reference Networks. A success story for patients living with a rare disease". Find out more about ERN ReCONNET and other ERNs at this link: https://lnkd.in/dDeVvd9g
- [Meet our new UCTD ePAG Advocate Ramona Luciu](https://reconnet.ern-net.eu/2025/02/26/meet-our-new-uctd-epag-advocate-ramona-luciu/) - Welcome to Ramona Luciu, the new ERN ReCONNET ePAG Advocate representing UCTD! Ramona Luciu is from from Romania, she has been diagnosed with UCTD in 2021 and she represents the UCTD patient community. Ramona is a member of the ART Association (Association of Patients with Inflammatory Rheumatic Diseases in Transilvania) and she has a degree in
- [ERN ReCONNET celebrates Rare Disease Day 2025](https://reconnet.ern-net.eu/2025/03/05/ern-reconnet-celbrates-rare-disease-day-2025/) - ERN ReCONNET celebrates the Rare Disease Day lighting the Leaning Tower of Pisa. ERNs stand close to all those living with a rare disease. Rare is many. Rare is strong. Rare is proud.
- [ERN RECONNET – NEWSLETTER N. 27: DECEMBER EDITION](https://reconnet.ern-net.eu/2025/01/02/ern-reconnet-newsletter-n-27-december-edition/) - The new ERN ReCONNET Newsletter n. 27 – DECEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: Season's Greetings from the Network Coordinator of ERN ReCONNET 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases is coming up! CPMS 2.0 Launch and Training Opportunity! Meet our new
- [New ePAGs Advocates joined the ERN ReCONNET](https://reconnet.ern-net.eu/2024/09/02/new-epags-advocates-joined-the-ern-reconnet/) - ERN ReCONNET is a growing Network and we are pleased to announce our new ePAG advocates that recently have joined us following the addition of Jose Ballarin in June. Those women will further strengthen our actions and impact across Europe on behalf of rare patients. Thank you and welcome on board! The Network welcomes Olga
- [ERN ReCONNET joins the World Myositis Day – Sept 21st](https://reconnet.ern-net.eu/2024/09/20/ern-reconnet-joins-the-world-myositis-day-sept-21st/) - ERN ReCONNET is not just a Network, it is a community where its members support each other. Having this in mind, for the first time ERN ReCONNET joins the World Myositis Day, scheduled on Sept. 21st. We celebrate this awareness day on social media as we did for other rCTDs in the past year, to
- [ERN RECONNET – NEWSLETTER N. 26: SEPTEMBER EDITION](https://reconnet.ern-net.eu/2024/09/11/ern-reconnet-newsletter-n-26-september-edition/) - The new ERN ReCONNET Newsletter n. 26 – SEPTEMBER EDITION – is out! Here is a list of our last news for this amazing new edition: 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases New ERN ReCONNET Disease Coordinators ERN ReCONNET at the ACR 2024 ERN ReCONNET Exchange Program - Update ERN ReCONNET Webinars (Season
- [ERN ReCONNET at the ACR 2024](https://reconnet.ern-net.eu/2024/09/06/ern-reconnet-at-the-acr-2025/) - ERN ReCONNET is very honored to be at the ACR Convergence 2024 that will take place November 14 – 19 at the Walter E. Washington Convention Center in Washington, D.C.! The ERN ReCONNET Coordination Team will be at Booth number 2101. Stop by to say hi, to chat with us, and to meet with other
- [ERN ReCONNET Newsletter n. 0 - February 2018](https://reconnet.ern-net.eu/2019/03/05/newsletter-00/) - ERN ReCONNET Newsletter n. 0
- [ERN ReCONNET Newsletter n. 1 - June 2018](https://reconnet.ern-net.eu/2019/03/05/newsletter-01/) - ERN ReCONNET Newsletter n. 1
- [ERN ReCONNET Newsletter n. 2 - September 2018](https://reconnet.ern-net.eu/2019/03/05/newsletter-02/) - ERN ReCONNET Newsletter n. 2
- [ERN ReCONNET Newsletter n. 3 - December 2018](https://reconnet.ern-net.eu/2019/03/05/newsletter-03/) - ERN ReCONNET Newsletter n. 3
- [ERN ReCONNET Newsletter n. 4 - March 2019](https://reconnet.ern-net.eu/2019/04/04/newsletter-04/) - ERN ReCONNET Newsletter n. 4
- [ERN ReCONNET Newsletter n. 5 - June 2019](https://reconnet.ern-net.eu/2019/07/05/newsletter-05/) - ERN ReCONNET Newsletter n. 5
- [ERN ReCONNET Special Issue – Call 2019](https://reconnet.ern-net.eu/2019/09/24/call-2019/) - ERN ReCONNET Newsletter New Call 2019
- [ERN ReCONNET Newsletter n. 6](https://reconnet.ern-net.eu/2020/01/02/newsletter-06/) - ERN ReCONNET Newsletter n. 6
- [ERN ReCONNET Newsletter n. 7](https://reconnet.ern-net.eu/2020/01/02/ern-reconnet-newsletter-n-7/) - ERN ReCONNET Newsletter n. 7
- [ERN ReCONNET Newsletter n. 8](https://reconnet.ern-net.eu/2020/05/12/nl08/) - ERN ReCONNET Newsletter n. 8
- [ERN ReCONNET Newsletter n. 9](https://reconnet.ern-net.eu/2020/07/21/ern-reconnet-newsletter-n-9/) - ERN ReCONNET Newsletter n. 9
- [ERN ReCONNET Newsletter n. 10](https://reconnet.ern-net.eu/2021/03/25/nl-10/) - ERN ReCONNET Newsletter n. 10
- [ERN ReCONNET Newsletter n. 11](https://reconnet.ern-net.eu/2021/03/25/ern-reconnet-newsletter-n-11/) - ERN ReCONNET Newsletter n. 11
- [ERN ReCONNET Awareness Day Campaigns](https://reconnet.ern-net.eu/2024/09/10/ern-reconnet-awareness-day-campaigns/) - Here is a collection of the dedicate ERN ReCONNET dissemination slides developed and shared on our social media channels (LinkedIn, X, YouTube, Instagram, @Threads, and Facebook) during the selected awareness days/month.
- [Newborn Screening (NBS) Awareness Month](https://reconnet.ern-net.eu/2024/09/10/newborn-screening-nbs-awareness-month/) - In the US, during 1950s-1960s Dr. Robert Guthrie developed a paper blood spot card test as a new assay to screen newborns for phenylketonuria, PKU: The Newborn Screening (NBS) test was born. His pioneer work defined the beginning of the NBS programs that led to early diagnosis of children with genetic conditions (like PKU, a
- [ERN ReCONNET Newsletter n. 15](https://reconnet.ern-net.eu/2022/04/20/nl-15/) - ERN ReCONNET Newsletter n. 15
- [ERN ReCONNET Newsletter n. 16](https://reconnet.ern-net.eu/2022/04/20/nl-16/) - ERN ReCONNET Newsletter n. 16
- [ERN ReCONNET Newsletter n. 17](https://reconnet.ern-net.eu/2022/11/21/nl17/) - ERN ReCONNET Newsletter n. 17
- [ERN RECONNET NEWSLETTER N. 20](https://reconnet.ern-net.eu/2023/07/18/ern-reconnet-newsletter-n-20/) - ERN ReCONNET Newsletter n. 20
- [ERN ReCONNET Newsletter n. 12](https://reconnet.ern-net.eu/2021/04/07/ern-reconnet-newsletter-n-12/) - ERN ReCONNET Newsletter n. 12
- [ERN ReCONNET Newsletter n. 18](https://reconnet.ern-net.eu/2022/11/21/nl18/) - ERN ReCONNET Newsletter n. 18
- [ERN ReCONNET Newsletter n. 13](https://reconnet.ern-net.eu/2021/10/14/nl-13/) - ERN ReCONNET Newsletter n. 13
- [ERN ReCONNET Newsletter n. 14](https://reconnet.ern-net.eu/2021/10/14/nl-14/) - ERN ReCONNET Newsletter n. 14
- [ERN ReCONNET Infographic on Videocapillaroscopy](https://reconnet.ern-net.eu/2024/09/06/ern-reconnet-infographic-on-videocapillaroscopy/) - The ERN ReCONNET Education and Training Working Group (WG) is glad to release its new flyer on nailfold videocapillaroscopy (NVC), a new and informative document targeting patients and lay audience aimed at explaining such an important diagnostic approach. The document was developed by the Network under the leadership of Prof. Maurizio Cutolo from IRCSS –
- [ERN ReCONNET Newsletter n. 19](https://reconnet.ern-net.eu/2023/07/03/ern-reconnet-newsletter-19/) - ERN ReCONNET NL - n. 19
- [EURORDIS: Black Pearl Awards 2025 Nominations](https://reconnet.ern-net.eu/2024/08/30/eurordis-black-pearl-awards-2025-nominations/) - Don’t miss your chance to nominate your star of the rare disease community, or enter yourself, for the 2025 EURORDIS Black Pearl Awards! These award categories recognise the outstanding efforts of individuals, organisations, companies, researchers, scientists, media, and policy makers in bringing about change to improve the lives of the 30 million people in Europe
- [ERN ReCONNET New Disease Coordinators](https://reconnet.ern-net.eu/2024/08/30/ern-reconnet-new-disease-coordinators/) - The ERN ReCONNET has elected its new Disease Coordinators that will lead the activities and actions of the Ehlers-Danlos syndromes (EDS) and the Sjögren’s Syndrome* (SS) disease groups. The elections saw a huge participation among the Network members and as ERN ReCONNET we congratulate with Dr. Marco Castori from the Fondazione IRCCS-Casa Sollievo della Sofferenza, San
- [ERICA ERN Research Conference](https://reconnet.ern-net.eu/2024/08/27/erica-ern-research-conference/) - The ERICA 4th General Assembly & ERN Research Conference, hosted by MetabERN, will take place from December 11th to December 13th, 2024 in Udine (Italy). The aim of the ERICA consortium, in which all 24 ERNs take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and innovation capacity. ERICA
- [Rare DiseRare Diseases International (RDI) Public Webinar: Towards a World Health Assembly Resolution on Rare Diseases 2025](https://reconnet.ern-net.eu/2024/08/27/rare-diserare-diseases-international-rdi-public-webinar-towards-a-world-health-assembly-resolution-on-rare-diseases-2025/) - The public webinar “Towards a World Health Assembly Resolution on Rare Diseases 2025”, that will take place on Aug. 30th 2024, 14:00 and 15:30 CEST. This webinar, co-hosted by Rare Diseases International (RDI), the Arab Republic of Egypt, the State of Qatar, and Spain will be an opportunity to explain in more detail the opportunities
- [ERN ReCONNET Endorsed Event: 1st Myositis Summer School of the Myositis Network Germany](https://reconnet.ern-net.eu/2024/08/22/ern-reconnet-endorsed-event-1st-myositis-summer-school-of-the-myositis-network-germany/) - On August 9 and 10, 2024, the first Myositis Summer School of the Myositis Network Germany, endorsed by the ERN ReCONNET, took place at the Kerckhoff Campus of the JLU Gießen in Bad Nauheim. This summer school was made possible by the generous support of the Gabriele and Peter Nitschke Foundation. It offered intensive theoretical
- [ERN: Clinical Practice Guidelines And Clinical Decision Support Tools](https://reconnet.ern-net.eu/2024/08/21/ern-clinical-practice-guidelines-and-clinical-decision-support-tools/) - There are a number of challenges surrounding the development of Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. One of the most relevant barriers is the lack of high-quality evidence, which cutting-edge methodological frameworks like GRADE rely on. Therefore, there is a need for specific methodological approaches that can provide
- [Enpr-EMA: Cross-Border Access to Paediatric Clinical Trials Survey](https://reconnet.ern-net.eu/2024/08/19/enpr-ema-cross-border-access-to-paediatric-clinical-trials-survey/) - The Cross-Border Access to Paediatric Clinical Trials Working Group (WG) created by the European Network of Paediatric Research at the European Medicines Agency (Enpr-EMA) is collecting data. The aim of this WG is to facilitate the inclusion of children and young people in clinical trials across Europe avoiding any language barriers. Recently, this WG has identified that
- [Newborn Screening - Real World Applications and Technologies](https://reconnet.ern-net.eu/2024/08/08/newborn-screening-real-world-applications-and-technologies/) - IRDiRC's Special Edition on "Newborn Screening - Real World Applications and Technologies" is now out. Guest editors are Dr. David A. Pearce chair of IRDiRC and Dr. Virginie Bros-Facer member of the Diagnostic Scientific Committee at IRDiRC. Newborn screening (NBS) programs are an integral part of public health systems aiming to identify infants born with
- [AI Act](https://reconnet.ern-net.eu/2024/08/07/ai-act/) - The EU Commission developed its AI Act, the first-ever legal framework on AI, which addresses the risks of AI and positions Europe to play a leading role globally. The AI Act provides AI developers and deployers with clear requirements and obligations regarding specific uses of AI. At the same time, the regulation seeks to reduce
- [EURORDIS 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’](https://reconnet.ern-net.eu/2024/08/05/eurordis-6th-mental-health-wellbeing-webinar-how-to-deliver-a-diagnosis/) - The 6th Mental Health & Wellbeing Webinar: ‘How to deliver a diagnosis’ webinar organized by EURORDIS is scheduled for Oct. 23rd 2024 – from 2.00 pm to 3.30 pm CET. The ERN ReCONNET will be actively involved as our Scientific Coordinator, Dr. Talarico, will be one of the invited speakers. Registration is free and open.
- [New Jardin website is now online!](https://reconnet.ern-net.eu/2024/08/02/new-jardin-website-is-now-online/) - JARDIN is a Joint Action (JA) created to achieve the integration of the ERNs into National Healthcare Systems (NHS). The EU has funded this pioneering 3-year project involving all Member States (MS) plus Norway and Ukraine with the specific aim of reducing the diagnostic odyssey through the improvement the ERNs accessibility for patients across Europe.
- [Take the new Rare Barometer survey on the impact of rare diseases on everyday life: Make your voice heard!](https://reconnet.ern-net.eu/2024/08/01/take-the-new-rare-barometer-survey-on-the-impact-of-rare-diseases-on-everyday-life-make-your-voice-heard/) - The new EURORDIS Rare Barometer survey on the impact of rare diseases on everyday life is now live! By asking questions on your participation in daily activities, such as school, leisure, and work, and on what you would need to live life at its fullest, EURORDIS will be able to advocate for people with a
- [EJP RD - Data Resources and Tools Knowledge Awareness](https://reconnet.ern-net.eu/2024/08/01/ejp-rd-data-resources-and-tools-knowledge-awareness/) - EJP RD is still gathering responses for its survey on the impact of Rare Diseases research resources and tools provided by the Network. As a valued member of the Rare Diseases research community, your feedback is crucial. This survey will help them understand and address the gaps in rare diseases research, guiding our future efforts
- [EJP RD Online Course “Innovative Therapies and Personalized Medicine for Rare Diseases”](https://reconnet.ern-net.eu/2024/07/12/ejp-rd-online-course-innovative-therapies-and-personalized-medicine-for-rare-diseases/) - Exciting News! The new European Joint Programme of Rare Diseases (EJP RD) course "Innovative Therapies and Personalized Medicine for Rare Diseases" is officially live. Explore cutting-edge advancements in gene therapy, regenerative medicine, and beyond. Be a part of the revolution in rare disease treatment! In this five-week course of the EJP RD, you will have
- [ERN ReCONNET joins the World Scleroderma Day 2024](https://reconnet.ern-net.eu/2024/06/28/ern-reconnet-joins-the-world-scleroderma-day-2024/) - For the second consecutive year, ERN ReCONNET is happy to join the World Scleroderma Day on June 29th. Follow us on our social media (LinkedIn X YouTube Instagram @Threads Facebook) to celebrate together the World Scleroderma Day! Systemic sclerosis (SSc) is an orphan disease systemic connective tissue disease characterised by autoimmunity, fibrosis of the skin, and internal organs and vasculopathy. Unfortunately
- [AN IMPORTANT ARTICLE FROM OUR EPAG, JEANATTE ANDERSEN!](https://reconnet.ern-net.eu/2024/06/26/an-important-article-from-our-epag-jeanatte-andersen/) - Recently, our ERN ReCONNET ePAG representative for Systemic Lupus Erythematous (SLE), Jeanette Andersen, has co-authored an important article on children born to mothers with autoimmune rheumatic diseases published in a special edition on pregnancy of The Lancet Rheumatology, the world-leading public health journal. This scientific article shed a light on how maternal autoimmune rheumatic diseases can influence the
- [ERN ReCONNET - Endorsed Event: 43rd European Workshop for Rheumatology Research](https://reconnet.ern-net.eu/2024/05/08/ern-reconnet-endorsed-event-43rd-european-workshop-for-rheumatology-research/) - It is with a great pleasure that ERN ReCONNET presents the 43rd European Workshop for Rheumatology Research (EWRR) that will be held for the first time in Genova, Italy, on May 9-11 2024. ERN ReCONNET has endorsed this important workshop, our Network experts are invited speakers and will be moderators of this event focused on
- [EURORDIS Webinar: Rare Barometer survey on the impact of rare diseases on everyday life](https://reconnet.ern-net.eu/2024/06/24/eurordis-webinar-rare-barometer-survey-on-the-impact-of-rare-diseases-on-everyday-life/) - On Wednesday 10 July at 2.30 pm CEST, Rare Barometer, the global survey initiative of EURORDIS – Rare Diseases Europe, will launch a new survey on the impact of rare diseases on everyday life. The survey will be open to all people living with any rare disease and their family members worldwide and will be available
- [The paediatric Patient Expert Group (PEG)](https://reconnet.ern-net.eu/2024/06/24/the-paediatric-patient-expert-group-peg/) - Are you an adolescent aged from 12 to 18 living with arthritis (including rare juvenile idiopathic arthritis, polyarticular juvenile idiopathic arthritis, systemic juvenile idiopathic arthritis, giant cell arteritis) or multiple sclerosis? Are you interested in getting the skills to actively participate in scientific research to contribute to developing and shape the themes of health, rare
- [New articles from our ePAG, Dr. Silvia Aguilera!](https://reconnet.ern-net.eu/2024/06/21/new-articles-from-our-epag-dr-silvia-aguilera/) - Recently, our ERN ReCONNET ePAG representative for Antiphospholipid Syndrome (APS), Dr. Silvia Aguilera, has published a very interesting article in a special edition on pregnancy of The Lancet Rheumatology, the world-leading public health journal, on the challenges of designing and conducting cohort studies and clinical trials in pregnant populations. In particular, the "Challenges of designing and
- [MEETING della partnership italiana della Joint Action JARDIN](https://reconnet.ern-net.eu/2024/06/20/meeting-della-partnership-italiana-della-joint-action-jardin/) - ERN ReCONNET è felice di poter condividere con tutti voi, la sua partecipazione all'evento organizzato per oggi dal Ministero della Salute a Roma, focalizzato sul progetto Jardin (JA) - Joint Action atto ad integrare gli ERNs sui Sistemi Sanitari Nazionali. Questo è il secondo evento che si svolge in Italia sul tema, il primo si
- [EUCOPE webinar: Making Cross-Border Healthcare for ATMPs in Rare Diseases a Reality](https://reconnet.ern-net.eu/2024/06/17/eucope-webinar-making-cross-border-healthcare-for-atmps-in-rare-diseases-a-reality/) - Accessing healthcare across national borders has been a long-standing issue for people with rare diseases. The primary reason for this is that these patients live across Europe, but – due to the rarity of these diseases – the clinical expertise tends to be concentrated in certain countries only. This issue of cross-border healthcare is challenging
- [ERICA GA & ERN Research Conference](https://reconnet.ern-net.eu/2024/06/18/erica-ga-ern-research-conference/) - The ERICA 4th General Assembly & ERN Research Conference will take place from December 11th to December 13th, 2024 in Udine, Italy and it will be hosted by MetabERN. The aim of the ERICA consortium, in which all 24 ERNs take part, is to build on the strength of the individual ERNs and create a platform that integrates all ERNs research and
- [EJP RD: End-user Training for the EJP RD Virtual Platform](https://reconnet.ern-net.eu/2024/06/18/ejp-rd-end-user-training-for-the-ejp-rd-virtual-platform/) - The EJP RD end-user Training Webinar is scheduled on June 26th, 2024 from 10:00-12:00 CEST. This free online training is intended for potential users of the EJP RD Virtual Platform (VP) that is developed in the context of its Pillar 2 activities, the participants will be equipped with the necessary skills to effectively utilize the
- [New publications: Introducing the DUC Framework and Common Use Condition Elements](https://reconnet.ern-net.eu/2024/06/05/new-publications-introducing-the-duc-framework-and-common-use-condition-elements/) - EJP RD proudly announces two ground-breaking publications that help pave the way for the future of research data sharing and information governance 1) Getting your DUCs in a row – standardising the representation of Digital Use Conditionshttps://www.nature.com/articles/s41597-024-03280-6 This publication reports a robust, standard data structure that addresses the complex challenge of responsibly sharing research data,
- [HaDEA & the ERNs](https://reconnet.ern-net.eu/2024/06/03/hadea-the-erns/) - The European Health and Digital Executive Agency (HaDEA) has signed 24 multi-annual grant agreements with the ERNs for a total contribution of over €77 million for the period October 2023 - September 2027. The ERNs are virtual networks comprising 1619 highly specialised centres in 27 EU countries and Norway. Their work is crucial in facilitating
- [ERN ReCONNET at EULAR 2024](https://reconnet.ern-net.eu/2024/06/03/ern-reconnet-at-eular-2024/) - The EULAR 2024 Congress will be held onsite, in Vienna, Austria. The EULAR 2024 Congress will offer a cutting-edge congress experience that will only be enhanced by the outstanding celebrations of the EULAR Communities. Since its introduction in 2000, the EULAR European Congress of Rheumatology has become the primary platform for exchange of scientific and clinical
- [WHO. World Health Assembly endorses resolution on social participation](https://reconnet.ern-net.eu/2024/05/30/who-world-health-assembly-endorses-resolution-on-social-participation/) - At the Seventy-seventh World Health Assembly, Member States endorsed a resolution (PDF doc to be downloaded WHO Resolution - Public Health Engagement) to implement, strengthen and sustain regular and meaningful social participation in decision-making processes for health. Social participation, as defined by WHO, means empowering people, communities and civil society through inclusive participation in decision-making processes that
- [New EU rules to ensure safety of medical devices](https://reconnet.ern-net.eu/2024/05/30/new-eu-rules-to-ensure-safety-of-medical-devices/) - The EU revised the laws governing medical devices and in vitro diagnostics to align with the developments of the sector over the last 20 years. The priority was to ensure a robust, transparent and sustainable regulatory framework and maintain a high level of safety, while supporting innovation. Two new regulations on medical devices and in
- [EU Commission. European Health Union: stronger and better prepared for the future](https://reconnet.ern-net.eu/2024/05/30/eu-commission-european-health-union-stronger-and-better-prepared-for-the-future/) - The Commission adopted a Communication on the European Health Union (PDF doc to be downloaded: EU Commission - EU Health Policy Comm 2024), which highlights the strides made in EU health policy over the last four years, for the benefit of citizens in the EU and worldwide. The start of this mandate was marked by the
- [Public consultation: conflict-of-interest rules under the EU Health Technology Assessment Regulation](https://reconnet.ern-net.eu/2024/05/30/public-consultation-conflict-of-interest-rules-under-the-eu-health-technology-assessment-regulation/) - The European Commission launched an online public consultation on the draft implementing act on the management of conflicts of interest in Health Technology Assessments (HTA). This online consultation will be open for responses until 26 June 2024. The draft implementing act provides rules for managing conflicts of interest of actors such as the representatives in
- [From open data to knowledge: enhancing European resilience to health crises](https://reconnet.ern-net.eu/2024/05/22/from-open-data-to-knowledge-enhancing-european-resilience-to-health-crises/) - The BY-COVID project is hosting a high-level event entitled “From open data to knowledge: enhancing European resilience to health crises” to highlight and discuss the value of open data and showcasing the impact of the project on science and society. The event will feature panel discussions with experts from various sectors, including policy-makers from the European and
- [EU4Health Stakeholders’ Conference](https://reconnet.ern-net.eu/2024/05/22/eu4health-stakeholders-conference/) - On 19 June 2024, the European Commission will host the EU4Health Stakeholders' Conference in Brussels and online. The event will focus on important health priorities and will offer an opportunity to reflect on priorities, strategic orientations, and future work programs. The event programme will cover several topics: Health promotion & disease prevention Health systems Crisis
- [Medical devices: new guidance for industry and notified bodies](https://reconnet.ern-net.eu/2024/05/22/medical-devices-new-guidance-for-industry-and-notified-bodies/) - A new revision of the guidance available to applicants, marketing authorisation holders and notified bodies of medical devices has been published today. This question-and-answer document provides practical considerations on the implementation of the medical devices and in vitro diagnostic regulations for combinations of medicinal products and medical devices. Products that combine a medicinal product (or substance) and a medical device are regulated either under the pharmaceutical
- [ERN RECONNET – NEWSLETTER N. 25: SPRING EDITION](https://reconnet.ern-net.eu/2024/05/21/ern-reconnet-newsletter-n-25-spring-edition/) - The new ERN ReCONNET Newsletter n. 25 - SPRING EDITION - is out! Here is a list of our last news for this edition: SAVE THE DATE! 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases SAVE THE DATE! ERN ReCONNET Event: 2nd edition of the Good Practice Sharing Initiative, THURSDAY MAY 30TH2024, FROM
- [ERN ReCONNET Event: Good Practice Sharing Initiative](https://reconnet.ern-net.eu/2024/05/13/ern-reconnet-event-good-practice-sharing-initiative/) - Save the date: Thursday May 30th 2024, from 15:00 to 17:00 CEST ERN ReCONNET invites you all to join our event! This important event has been organized by the ERN ReCONNET Working Group Research and Quality of Care led by Dr. Rosaria Talarico, our Scientific Coordinator, and ePAG Ilaria Galetti. Last year, the event was
- [31st annual PReS Meeting](https://reconnet.ern-net.eu/2024/05/20/31st-annual-pres-meeting/) - 31st annual European Pediatric Rheumatology (PReS) Congress will be held on September 11-14, 2024, in Gothenburg, Sweden. This year will be celebrated the 25th anniversary of the foundation of PReS and the organizing committee will celebrate the jubilee with an exciting and inspiring program reflecting recent advancements within the field. And, as always at PReS meetings, the
- [Conference - 'The State of Health in the EU'](https://reconnet.ern-net.eu/2024/05/15/conference-the-state-of-health-in-the-eu/) - The Conference in the framework of the Belgian presidency of the Council of the European Union. Working together with healthcare professionals is imperative in order to both define and implement a comprehensive and sustainable European Health Union which is fit for the future. Future medicine should be characterised by the four 'Ps': it should be
- [European Mental Health Week, 13-19 May 2024](https://reconnet.ern-net.eu/2024/05/14/european-mental-health-week-13-19-may-2024/) - ERN ReCONNET strongly believes in the importance of Mental Health for all persons. Due to that, this year for the first time, ERN ReCONNET decided to join the social media campaign and raise awareness on this crucial aspect of our health that impacts our quality of life. The Network embraces and shares the same vision, mission, and
- [Europe Day](https://reconnet.ern-net.eu/2024/05/09/europe-day/) - Europe Day held on 9 May every year celebrates peace and unity in Europe. The date marks the anniversary of the historic 'Schuman declaration' that set out his idea for a new form of political cooperation in Europe, which would make war between Europe's nations unthinkable. Schuman's proposal is considered to be the beginning of what
- [Commission launches the Critical Medicines Alliance to help prevent and address shortages of critical medicines](https://reconnet.ern-net.eu/2024/05/08/commission-launches-the-critical-medicines-alliance-to-help-prevent-and-address-shortages-of-critical-medicines/) - The European Commission's Health Emergency Preparedness and Response Authority (HERA), working with the Belgian Presidency of the Council of the EU, have today launched the Critical Medicines Alliance at the margins of the informal EPSCO Council meeting of health ministers, as part of the actions to build a strong European Health Union. The Alliance brings together national
- [MOOC "Health Data Ethics & Regulatory Frameworks in Rare Disease Research"](https://reconnet.ern-net.eu/2024/05/08/health-data-ethics-regulatory-frameworks-in-rare-disease-research/) - The Foundation For Rare Diseases in collaboration with Gianni Benzi Foundation, ERN EpiCARE and Eurordis Rare Diseases Europe, has codeveloped a MOOC (Massive Open Online Course) entitled “Health data ethics & regulatory frameworks in rare disease research”. This course is part of the European Joint Programme for Rare Diseases (EJPRD). The course is now open for registrations and can be accessed through
- [Cross-border patient healthcare (Directive 2011/24/EU and its updates)](https://reconnet.ern-net.eu/2024/05/06/15991/) - The 2022 Report on the Member State data on cross-border patient healthcare following Directive 2011/24/EU is available for consultation. 2022 Report Cross-border patient healthcare data In addition, a new brochure has been developed, it can be downloaded here: Cross-border healthcare brochure More info about Cross border healthcare can be found here.
- [Conferenza Finale del progetto LIMeNar](https://reconnet.ern-net.eu/2024/05/03/conferenza-finale-del-progetto-limenar/) - ERN ReCONNET è official Collaborating Partner del progetto LIMeNar organizzato dall'Istituto Superiore di Sanità (ISS). Nell’ambito del Laboratorio di Health Humanities del Centro Nazionale Malattie Rare, a distanza di 8 anni dalla pubblicazione delle Linee di Indirizzo sulla medicina narrativa, l'ISS sta conducendo insieme alla Società Italiana di Medicina Narrativa (SIMeN) il progetto di ricerca "LIMeNar -
- [](https://reconnet.ern-net.eu/2024/04/30/15828/) - ERN ReCONNET would like to congratulate to our ePAG Ilaria Galetti for the European Pulmonary Fibrosis Federation (EU-PFF) Patient Advocacy Champion Award 2024. Ilaria was honored with this important award for her dedication and the impact she has truly made in the lives of those affected by Pulmonary Fibrosis. Congrats from all all of us, we are happy to
- [ERICA Webinar: c4c expert advice, patient and public involvement, data standards](https://reconnet.ern-net.eu/2024/04/30/erica-webinar-c4c-expert-advice-patient-and-public-involvement-data-standards/) - The webinar is organized by c4c and it will be held on May 3rd, 2024 from 1 pm to 2 pm CEST. Speakers will be Mark Turner (c4c), Fenna Mahler (c4c), Pamela Dicks (NHS Scotland Children's Research Network and eYPAGnet), and Becca Leary (University of Newcastle ) The webinar will be introduced by Prof. Mark Turner, the CEO of
- [Undiagnosed Day 2024](https://reconnet.ern-net.eu/2024/04/29/undiagnosed-day-2024/) - ERN ReCONNET joins this international campaign to shed a light on this important matter as 350 million people around the world live with an undiagnosed disease. Research on our human genome (e.g., genome sequencing, exosome, and other techniques) have the pave the way to new strategies and approaches providing answers to some of these patients
- [EU4Health: Survey on current and future health priorities](https://reconnet.ern-net.eu/2024/04/24/eu4health-survey-on-current-and-future-health-priorities/) - Targeted Consultation on EU4Health: have your say on future priorities, orientations and needs Help shape the direction of the #EU4Health funding programme for 2025! As we reach the mid-point of the EU4Health programme and building on last year’s successful consultation, the European Commission invites interested stakeholders to share their views on future priorities, orientations and needs for
- [European Health Data Space](https://reconnet.ern-net.eu/2024/04/24/european-health-data-space/) - The European Health Data Space (EHDS) will be a key pillar of the strong European Health Union. and is the first common EU data space in a specific area to emerge from the European strategy for data. In spring 2024, the European Parliament and the Council reached a political agreement on the Commission proposal for the EHDS. The
- [Share4Rare webinar on the 2024 research project call](https://reconnet.ern-net.eu/2024/04/24/share4rare-webinar-on-the-2024-research-project-call/) - Share4Rare will host a webinar (in English) Thursday, May 9th at 4:00 pm on the 2024 research project call. Share4Rare aims to enhance research on rare diseases through collaborative knowledge generation. The platform provides researchers with a secure infrastructure to conduct their investigations, accompanied by a team of professionals trained to provide personalised support and facilitate the research process. In connection of patient-driven research,
- [12th European Conference on Rare Diseases and Orphan Products](https://reconnet.ern-net.eu/2024/04/15/12933/) - ERN ReCONNET is proud to announce to be an ECRD 2024 Associated Partner! The ECRD is the largest, patient-led, rare disease policy-shaping event held in Europe. The event is coming up soon, don't forget to do your registration. By bringing together people with rare diseases and patient advocates, policy makers, healthcare industry representatives, clinicians, regulators and Member State representatives,
- [ERICA Webinar: c4c trials, education and training](https://reconnet.ern-net.eu/2024/04/09/erica-webinar-c4c-trials-education-and-training/) - This webinar is organized by ERICA in collaboration with conect4children, EJP RD, and ERN BOND and it is scheduled for April 11th at 13:00 CEST. The webinar will be introduced by Prof. Mark Turner, the CEO of the non-profit. Chloe Bickerstaff, service lead will outline services for site identification, site level feasibility, and support during trials using case studies and metrics. Education and
- [Share4Rare: Medical books](https://reconnet.ern-net.eu/2024/04/04/share4rare-medical-books/) - Share4Rare is a project aimed at making a difference in rare diseases, where the entire community gathered by patients, carers, clinicians, and researchers, join forces. Share4Rare is funded by a Horizon2020 grant from the European Commission. The project is divided into work packages aligned with its strategic objectives. The Share4Rare's collection of medical books is
- [ERN RECONNET – NEWSLETTER N. 22 IS OUT!](https://reconnet.ern-net.eu/2023/12/22/ern-reconnet-newsletter-n-22-is-out/) - The new ERN ReCONNET Newsletter n. 22 is out! Here is a list of our news: Collection of stories of SLE patients ERN ReCONNET transition of care survey for HCPs New Sjogren’s Syndrome Disease Coordinator elected ERN ReCONNET ePAG, Silvia Aguilera, won the EURORDIS Volunteer Award 2024 ERN ReCONNET webinars and YouTube Channel Mapping of
- [ERN ReCONNET Transition of Care Task Force](https://reconnet.ern-net.eu/2024/03/25/ern-reconnet-transition-of-care-task-force-for-the-world-young-rheumatic-disease-day/) - ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs. Transitional care, also known as transition, refers to a
- [International Women's Day](https://reconnet.ern-net.eu/2024/03/08/international-womens-day/) - ERN ReCONNET recognizes the value of women in our society and in our Network. Thank you all for what you do!
- [ERN RECONNET – ENDORSED EVENT: II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES](https://reconnet.ern-net.eu/2024/03/04/ern-reconnet-endorsed-event-ii-xuec-conference-on-systemic-autoimmune-minoritary-diseases/) - ERN ReCONNET is pleased to present the II XUEC CONFERENCE ON SYSTEMIC AUTOIMMUNE MINORITARY DISEASES that will be held in Barcelona - Spain, on February 21st, 2024. ERN ReCONNET has endorsed this important meeting organized by Dr. Jordi Gratacós and Prof. Ricard Cervera, Coordinators of the XUEC-AIS (Network of Clinic Expertise Units – Systemic autoimmune diseases)
- [ERN ReCONNET joins the light up initiative for the rare disease day (RDD 2024)](https://reconnet.ern-net.eu/2024/02/29/ern-reconnet-joins-the-light-up-initiative-for-the-rare-disease-day-rdd-2024/) - ERN ReCONNET joins the Light Up initiative for the Rare Disease Day 2024 by coloring Pisa and San Giovanni Rotondo (Foggia) Starting 2008, the Rare Disease Day is celebrated all over the world the last day of February. Every year, the international rare disease community organizes initiatives, events to raise awareness among general society and
- [ERN RECONNET – NEWSLETTER N. 24: Light Up initiative for the Rare Disease Day 2024](https://reconnet.ern-net.eu/2024/03/01/ern-reconnet-newsletter-n-24-ern-reconnet-joins-the-light-up-initiative-for-the-rare-disease-day-2024/) - ERN RECONNET JOINS THE LIGHT UP INITIATIVE FOR THE RARE DISEASE DAY (RDD 2024) In this ERN ReCONNET Newsletter n. 24, the Network is happy to share with you the creation of this virtual bridge between Pisa and San Giovanni Rotondo (Foggia) that connects two Italian centers of our Network. We would like to thank the archbishop
- [Rare Disease Day: discover how the EU is tackling rare diseases through the ERNs](https://reconnet.ern-net.eu/2024/02/29/rare-disease-day-discover-how-the-eu-is-tackling-rare-diseases-through-the-erns/) - Today we celebrate Rare Diseases Day. In the EU, up to 36 million people live with a rare disease, with around 80% of rare diseases having a genetic origin. Among them, 70% begin to manifest as early as childhood. To tackle rare diseases, the EU has implemented various initiatives aimed at helping improve the diagnosis,
- [ERN RECONNET – NEWSLETTER N. 23: Webinar calendar!](https://reconnet.ern-net.eu/2024/02/20/ern-reconnet-newsletter-n-23-webinar-calendar/) - The ERN ReCONNET 2024 webinar calendar is now available! Since October 2023, the organisation of the ERN ReCONNET webinars is managed by the Team of the IRCCS AOU San Martino in Genoa (Italy) and in particular by Prof. Maurizio Cutolo and the Genoa Team. In this ERN ReCONNET Newsletter n. 23, the Network is glad
- [ERN RECONNET – ENDORSED EVENT: The 5th International Symposium on IgG4 – Related Disease](https://reconnet.ern-net.eu/2024/01/22/ern-reconnet-endorsed-event-the-5th-international-symposium-on-igg4-related-disease/) - VIDEO PILLS with PROF. EMANUEL DELLA TORRE where he introduces the Symposium and why the ERN ReCONNET endorsement is important are available in English and Italian. It is with a great pleasure that ERN ReCONNET invites you to register at the 5th International Symposium on IgG4-Related Disease that will be held for the first
- [Rare Diseases in the EU: Joint Action shaping the future of ERNs JARDIN kick-off meeting](https://reconnet.ern-net.eu/2024/02/09/rare-diseases-in-the-eu-joint-action-shaping-the-future-of-erns-jardin-kick-off-meeting/) - ERN ReCONNET is honored to join the major conference on Rare Diseases in the EU: Joint Action shaping the future of ERNs organized by the European Economic and Social Committee (EESC) with the Directorate-General for Health and Food Safety (DG SANTE) of the European Commission. The event will take place on March 8th, 2024 in Brussels, Belgium. The conference will conclude the
- [8th World Scleroderma Congress](https://reconnet.ern-net.eu/2024/02/09/8th-world-scleroderma-congress/) - ERN ReCONNET is glad to share with you the upcoming 8th World Scleroderma Congress that will be held on March 14- 16, 2024 in Prague (Czech Republic). The first 5 congresses in Florence 2010, Madrid 2012, Rome 2014, Lisbon 2016, Bordeaux 2018, and two online in 2020 and 2022 have been a success contributing to
- [Patient World Congress- World Scleroderma Congress 2024](https://reconnet.ern-net.eu/2024/02/05/world-scleroderma-congress-2024/) - The Federation of European Scleroderma Associations (FESCA) is pleased to announce that the Patient World Congress which will take place on the 15-16 March, 2024 in Prague, Czech Republic. The programme has been designed for patients and by patients, and will cover topics including, are the most recent scientific developments and treatment recommendations, management of
- [EJP RD Final Conference](https://reconnet.ern-net.eu/2024/02/07/ejp-rd-final-conference/) - The EJP RD Final Conference is scheduled to take place from May 27th to May 28th, 2024 in Bari, Italy, this conference is set to bring together leading experts, professionals, and enthusiasts from around the world. Please note: the hybrid event is open in person only to invited people. The event is open for all online. Event Highlights:
- [New ERN ReCONNET video to launch the RARE DISEASES AWARENESS MONTH 2024!](https://reconnet.ern-net.eu/2024/02/01/ern-reconnet-video-for-the-beginning-of-the-rare-diseases-awareness-month-2024/) - ERN ReCONNET launched its initiatives for the Rare Disease Awareness Month with this video!
- [Let's start the awareness month of Rare Diseases 2024!](https://reconnet.ern-net.eu/2024/02/01/lets-start-the-awareness-of-rare-diseases-2024/) - February has started and ERN ReCONNET is very excited to be part of the global movement aimed at raising awareness of Rare Diseases! A few numbers and facts to recall the current status quo of Rare Diseases. Let's start... 30 MILLION people are living with a rare disease in 48 countries in Europe Each rare disease affects fewer
- [EMA webinar for RDD: Orphan medicines development - ask the European regulator](https://reconnet.ern-net.eu/2024/01/29/ema-webinar-for-rdd-orphan-medicines-development-ask-the-european-regulator/) - The EMA’s Orphan Medicines Office is hosting an interactive webinar Rare Disease Day on 29 February 2024, to answer questions that developers of products for rare diseases or researchers in this field might have on orphan designations and rare disease development. The webinar will feature: short presentations on the background of orphan designation and the benefits it has brought
- [ERN ReCONNET joined the "Day of the Zebra"](https://reconnet.ern-net.eu/2024/01/31/ern-reconnet-joined-the-day-of-the-zebra/) - Since last year, ERN ReCONNET decided to join some international awareness days to raise awareness of relevant matters related to the healthcare ecosystem. As Network, we believe it is important to join the forces by participating to these social media campaigns. Jan. 31st is the Day of the Zebra, a day dedicated to shed a
- [EPH Conference](https://reconnet.ern-net.eu/2024/01/30/eph-conference/) - The main theme of the 17th EPH Conference Lisbon 2024 is: Sailing the waves of European public health: exploring a sea of innovation This year’s conference theme encapsulates the EPH collective mission. Just as explorers once set sail to discover new worlds, EPH, as public health professionals, embark on a journey of innovation and discovery in
- [Drug repurposing for rare: progress and opportunities for the rare disease community](https://reconnet.ern-net.eu/2024/01/22/drug-repurposing-for-rare-progress-and-opportunities-for-the-rare-disease-community/) - An interesting IRDiRC paper on a hot topic: Drug Repurposing. The article can be downloaded here 2024 - Jonker et al. Drug repurposing for rare progress and opportunities for the rare disease community
- [Nature Article: Rare-disease researchers pioneer a unique approach to clinical trials](https://reconnet.ern-net.eu/2024/01/11/nature-article-rare-disease-researchers-pioneer-a-unique-approach-to-clinical-trials/) - An important Nature article on the randomization and placebo groups studies, biomarkers, real-world data from wearables, and multi-center and adaptive trials in rare diseases written by Mike May. Pdf version can be downloaded here: Rare-disease researchers pioneer a unique approach to clinical trials
- [EUROPE RARE DISEASE SUMMIT 2024](https://reconnet.ern-net.eu/2024/01/17/europe-rare-disease-summit-2024-2/) - The second edition of the Europe Rare Disease Summit, set to take place on February 14th in Madrid, Spain. This is an in-person event aimed at improving and learning about Government Plans, Access & Financing, Clinical Research and Innovation, Artificial Intelligence and Data, and Social & Patients. Joining forces from all corners of Europe, this prestigious
- [Neurological Disorders and the European Reference Networks webinar](https://reconnet.ern-net.eu/2024/01/17/neurological-disorders-and-the-european-reference-networks-webinar/) - EpiCARE ERN, EURO NMD, ERN Ithaca & ERN RND have organized this interesting webinar focused on Neurological Disorders and the ERNs approach. Get this chance to get a deep dive into this world and register to this upcoming event! Webinar is scheduled for Jan. 18th at 17.00 CET. Registration is open.
- ["Real-World data, Machine learning and Deep analytics in rare diseases" webinar](https://reconnet.ern-net.eu/2024/01/15/real-world-data-machine-learning-and-deep-analytics-in-rare-diseases-webinar/) - The European Joint Programme on Rare Diseases is organizing the training webinar: "Real-World data, Machine learning and Deep analytics in rare diseases: Regulatory grade data collection for marketing authorization submissions – what is buzz, what is realistic?" that will be held online on 26 January 2024 from 2:00pm to 4:00pm CET. Registration is open here before 25 January 2024 at
- [EULAR 2024 | CONGRESS ABSTRACT SUBMISSION](https://reconnet.ern-net.eu/2024/01/11/eular-2024-congress-abstract-submission-2/) - EULAR invites you to submit an abstract to EULAR 2024, the European Congress of Rheumatology. Every year EULAR invites abstract submitters from all over the globe to present their work at the European Congress of Rheumatology. In 2024, we are creating a Congress with fully onsite programme. With the Abstract-related programme, all accepted abstract for presentation
- [EU4Health call for tenders for the HTAR implementation](https://reconnet.ern-net.eu/2024/01/11/eu4health-call-for-tenders-for-the-htar-implementation/) - The EU4Health call for tenders to build capacity and knowledge for the implementation of the EU Health Technology Assessment Regulation (HTAR) is out. HaDEA has published the call for tenders HADEA/2023/OP/0032 - Building capacity and knowledge for the implementation of the EU Health Technology Assessment Regulation (HTAR) This call aims to : Provide training services to
- [The 2024 EU4Health Work Programme is out!](https://reconnet.ern-net.eu/2024/01/11/the-2024-eu4health-work-programme-is-out/) - The 2024 EU4Health Work Programme is out: discover how it continues supporting health projects and initiatives in Europe. On 5 December, the European Commission adopted the 2024 EU4Health work programme. The EU4Health work programme for 2024 focuses on: Crisis preparedness (budget: € 485 517 000); Health promotion & disease prevention (budget: € 70 900 000);
- [European Research and Innovation Days (R&I Days) 2024](https://reconnet.ern-net.eu/2024/01/11/european-research-and-innovation-days-ri-days-2024/) - The European Commission’s annual flagship research and innovation event brings together policymakers, researchers, entrepreneurs, and the public to debate and shape the future of research and innovation in Europe and beyond. This fifth edition of the event will take place on 20 and 21 March 2024 both physically in Brussels and online, allowing everyone to get involved from anywhere.
- [European Innovation Council Summit 2024](https://reconnet.ern-net.eu/2024/01/11/european-innovation-council-summit-2024/) - Save the date Monday 18 March 2024 - Tuesday 19 March 2024 Brussels, Tour & Taxis The European Innovation Council Summit 2024 edition will be part of the Research & Innovation week (R&D week). In particular, this flagship event will take place on 18 and 19 March 2024 during the R&I week. The R&I week also includes
- [ERN ReCONNET Factsheet](https://reconnet.ern-net.eu/2024/01/11/ern-reconnet-factsheet/) - The European Commission has developed this relevant factsheet aimed at presenting the ERN ReCONNET and explaining the Network actions, initiatives, activities as well as its mission and goals. ERN ReCONNET Factsheet
- [ERN Assessment Manual for Applicants](https://reconnet.ern-net.eu/2024/01/10/ern-assessment-manual-for-applicants/) - Here is the document developed by the EC to help the applicants interested in joining the ERNs. ERNs - Call Assessment Manual ERNs - HCPs - Evaluation - FAQ
- [EC and EURORDIS documents in support of patients](https://reconnet.ern-net.eu/2024/01/10/ec-eurordis-documents-in-support-of-patients/) - Here is a list of relevant documents in support of rare/complex patients developed by EURORDIS and the European Commission: Thinking to apply as an ePAG advocate: Short guide (EURORDIS) Patient Guide to the ERNs Evaluation (EURORDIS) Patient Guide to the ERNs: FAQ factsheet European Commission flyers for patients and healthcare professionals translated in 28 languages.
- [European Commission Flyers](https://reconnet.ern-net.eu/2019/01/25/ec-flyers-2018/) - Information flyer for patients and healthcare professionals België Hrvatska Polska Belgique Ireland Portugal България Italia România Česko Latvijas Slovenija Danmark Lietuva Slovensko Deutschland Luxembourg Suomi Eesti Magyarország Sverige Ελλάδα Malta United Kingdom España Nederland France Norge
- [Clinical Patient Management System (CPMS): EU documents](https://reconnet.ern-net.eu/2024/01/09/clinical-patient-management-system-cpms-eu-documents/) - Here is a collection of important dissemination materials developed by the European Commission on the Clinical Patient Management System (CPMS). More info and details about this important system can be found here. EU - CPMS - Project Book EU - CPMS - Description
- [Research to Reality: Digital Solutions to European Challenges](https://reconnet.ern-net.eu/2024/01/09/research-to-reality-digital-solutions-to-european-challenges/) - The Research to Reality: Digital Solutions to European Challenges event will take place at The EGG in Brussels on 5 and 6 February 2024 from 8.00 to 17.00. This important event is organised under the Belgian presidency in cooperation with the European Commission, will take place in Brussels on 5 and 6 February 2024. This two-day event
- [Health workforce challenges: ways forward for policy making](https://reconnet.ern-net.eu/2024/01/09/health-workforce-challenges-ways-forward-for-policy-making/) - Join this #EUHPP Live Webinar scheduled on Jan. 26th from 10.00 to 12.00. Health workers are the beating heart of every health system, as no health system can function and be sustainable without them. The global and regional demand for health workers is expected to increase in the coming decades, due to the ageing of
- [ERN ReCONNET Clinical Patient Management System (CPMS)](https://reconnet.ern-net.eu/2024/01/04/ern-reconnet-clinical-patient-management-system-cpms/) - ERN ReCONNET has translated the CPMS description in 24 different languages, here is the list: ERN ReCONNET. CPMS - Bulgarian ERN ReCONNET. CPMS - Croatian ERN ReCONNET. CPMS - Czech ERN ReCONNET. CPMS - Danish ERN ReCONNET. CPMS - Dutch ERN ReCONNET. CPMS - English ERN ReCONNET. CPMS - Estonian ERN ReCONNET. CPMS - Finnish ERN ReCONNET. CPMS
- [ERN Exchange Program](https://reconnet.ern-net.eu/2024/01/04/ern-exchange-program/) - ERN ReCONNET Exchange Program aims at enhanceìing knowledge sharing and stimulating collaboration between health care professionals in ERNs and strengthen capacities and organisation of the ERNs. ERN ReCONNET launched 2 calls for interest (of a total of 3 calls of interest): The first edition started in 2021, after the first call, 3 exchanges were organised and the program was
- [New Sjogren’s Syndrome Disease Coordinator](https://reconnet.ern-net.eu/2023/12/20/new-sjogrens-syndrome-disease-coordinator/) - Congratulations to Prof. Chiara Baldini from AOUP for being elected as our new Disease Coordinator for Sjogren’s Syndrome! Prof. Baldini has been working in Sjögren’s syndrome (SS) research since 1999. The focus of her research was initially SS clinical phenotyping; during her PhD thesis, she investigated the salivary proteomic biomarkers in SS and later she had
- [ERN ReCONNET transition of care survey for HCPs](https://reconnet.ern-net.eu/2024/01/03/ern-reconnet-transition-of-care-survey-for-hcps/) - In 2023, a Task Force of ERN ReCONNET dedicated to the transition of care has been established. This task force is led by Prof. Gabriele Simonini (AOU Meyer IRCCS, Firenze, Italy) and Prof. Tadej Avčin (Ljubljana University Medical Centre, Slovenia). The core team includes expert clinicians in pediatric and adult care, patient representatives (ePAGs), and
- [EURORDIS Patient Partnership Framework for the ERNs](https://reconnet.ern-net.eu/2023/12/22/eurordis-patient-partnership-framework-for-the-erns/) - EURORDIS launched the Patient Partnership Framework for the European Reference Networks (ERNs) – a new guide designed to support the implementation of stronger patient partnership through all strategic and operational phases of the ERNs’ activities. ERNs are patient-centred networks, where collaboration between health professionals and people living with a rare disease fundamentally drives and shapes the priorities
- [5th International Symposium on IgG4-Related Disease](https://reconnet.ern-net.eu/2023/12/21/5th-international-symposium-on-igg4-related-disease/) - The 5th International Symposium on IgG4-Related Disease will be held from Thursday April 4th to Saturday April 6th, 2024 at the Star Rosa Grand Hotel (Milan, Italy). The 1st International Symposium on IgG4-Related Disease was held in Boston (US) in 2011. At that Symposium, investigators agreed upon the name for the condition — “IgG4-Related Disease”
- [Belgian Presidency Council of European Union](https://reconnet.ern-net.eu/2023/12/20/belgian-presidency-council-of-european-union/) - The Belgian presidency programme sets out the priorities and main directions of the Belgian presidency of the Council of the EU. The Belgian term takes place from the 1st of January to the 30th of June 2024. Belgium assumes the rotating presidency for the thirteenth time, at a moment when the European Union stands at
- [Artificial intelligence workplan to guide use of AI in medicines regulation](https://reconnet.ern-net.eu/2023/12/20/artificial-intelligence-workplan-to-guide-use-of-ai-in-medicines-regulation/) - This important workplan will help the European medicines regulatory network (EMRN) to embrace the opportunities of AI for personal productivity, automating processes and systems, increasing insights into data and supporting more robust decision-making to benefit public and animal health. The AI workplan, prepared under the joint HMA-EMA Big Data Steering Group (BDSG), ensures the EMRN remains at the
- [Joint Heads of Medicines Agencies (HMA)/European Medicines Agency (EMA) Multistakeholder workshop on Patient Registries](https://reconnet.ern-net.eu/2023/12/20/joint-heads-of-medicines-agencies-hma-european-medicines-agency-ema-multistakeholder-workshop-on-patient-registries/) - This joint two-day hybrid HMA/EMA workshop on Patient Registries on Feb. 12-13, 2024, at the European Medicines Agency, Amsterdam, the Netherlands. The workshop follows on the successful disease-specific workshops held between 2017 and 2019, as well as the EMA multi-stakeholder workshop on qualification of novel methodologies. The event will bring together representatives of registry holders,
- [EMA takes further steps to address critical shortages of medicines in the EU](https://reconnet.ern-net.eu/2023/12/20/ema-takes-further-steps-to-address-critical-shortages-of-medicines-in-the-eu/) - Recently, EMA published details of the newly created solidarity mechanism developed by the EMA Medicines Shortages Steering Group (MSSG). This voluntary mechanism allows Member States to support each other in the face of a critical medicine shortage. The solidarity mechanism, which is based on an informal setup during COVID-19, will enable any Member State facing a critical shortage
- [FESCA event in the EU Parliament](https://reconnet.ern-net.eu/2023/12/20/fesca-event-in-the-eu-parliament/) - Federation of European Scleroderma Associations (FESCA) held an event in the EU Parliament to present the findings of the patient survey, which highlighted the challenges faced by the Scleroderma community alongside the solutions to addressing these issues. At this roundtable speakers acknowledged the importance of the European References Networks (ERNs) in enhancing access to care,
- [2023 edition of the State of Health in the EU’s Synthesis Report](https://reconnet.ern-net.eu/2023/12/20/2023-edition-of-the-state-of-health-in-the-eus-synthesis-report/) - The Country Health Profiles are accompanied by a Synthesis Report presented by the European Commission, which highlights a selection of horizontal observations based on the analysis of the country profiles. The 2023 edition of the State of Health in the EU’s Synthesis Report consists of two parts. Part 1 presents a chapter on European health systems’ reforms and investments
- [Phenotypic similarity-based approach for variant prioritization for unsolved rare disease: a preliminary methodological report](https://reconnet.ern-net.eu/2023/12/20/phenotypic-similarity-based-approach-for-variant-prioritization-for-unsolved-rare-disease-a-preliminary-methodological-report/) - Interesting scientific article on a prioritization methodology aimed at solving the undiagnosed rare diseases. Here is the abstract for more detailed information and the pdf can be downloaded at the bottom. Rare diseases (RD) have a prevalence of not more than 1/2000 persons in the European population, and are characterised by the difficulty experienced in
- [1st REMEDi4ALL International Drug Repurposing Conference](https://reconnet.ern-net.eu/2023/12/20/1st-remedi4all-international-drug-repurposing-conference-2024/) - Join the first international drug repurposing conference “Bridging Boundaries: Innovating, Connecting & Reshaping Drug Repurposing”, #iDR24, co-organised by REMEDi4ALL, Beacon, and MeRIT on 6-7 March 2024 in Barcelona (Spain). REMEDi4ALL is Horizon Europe-funded project which aims at building a sustainable drug repurposing platform in Europe with an approach of co-creation amongst researchers, clinicians and patients.
- [EURORDIS Awards 2024 Volunteer Award is our ePAG Silvia Aguilera](https://reconnet.ern-net.eu/2023/12/12/eurordis-awards-2024-volunteer-award-is-our-epag-silvia-aguilera/) - ERN ReCONNET is proud and happy to annouce that our ePAG Advocate, Silvia Aguilera, has been awarded of the EURORDIS 2024 Volunteer Award. Congratulations from the entire Network! At ERN ReCONNET, Silvia is the ePAG Advocate representing the Antiphospolid Syndrome (APS) and she is also the Chair of the Young ERN ReCONNET Working Group together
- [Universal Health Coverage Day](https://reconnet.ern-net.eu/2023/12/12/universal-health-coverage-day/) - Universal Health Coverage Day on December 12th is the annual rallying point for the growing movement for health for all. It marks the anniversary of the United Nations’ historic and unanimous endorsement of universal health coverage in 2012. On Universal Health Coverage (UHC) Day 2023, global partners and communities are marking the campaign under the
- [New ERNs brochures from the European Commission in 26 languages](https://reconnet.ern-net.eu/2023/12/11/european-commission-brochures/) - The updated informative brochures on the European Reference Networks has been recently developed by the European Commission. The brochure was translated in 26 European languages: Bulgarian, Spanish, Cech, Danish, German, Estonian, Greek, English, French, Irish, Croatian, Italian, Latvian, Lithuanian, Hungarian, Maltese, Dutch, Polish, Portuguese, Romanian, Slovak, Slovenian, Finnish, Swedish, Norwegian, Ukrainian. Brochures (pdf) are available
- [Artificial intelligence act: Council and Parliament strike a deal on the first rules for AI in the world](https://reconnet.ern-net.eu/2023/12/11/artificial-intelligence-act-council-and-parliament-strike-a-deal-on-the-first-rules-for-ai-in-the-world/) - Following 3-day ‘marathon’ talks, the Council presidency and the European Parliament’s negotiators have reached a provisional agreement on the proposal on harmonised rules on artificial intelligence (AI), the so-called artificial intelligence act. The draft regulation aims to ensure that AI systems placed on the European market and used in the EU are safe and respect fundamental rights and EU values.
- [Public Meeting on Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement](https://reconnet.ern-net.eu/2023/12/11/public-meeting-on-advancing-the-development-of-therapeutics-through-rare-disease-patient-community-engagement/) - On December 14th, 2023, the FDA in collaboration with the Duke-Robert J. Margolis, MD Center for Health Policy (Duke-Margolis) will host a virtual public meeting titled “Advancing the Development of Therapeutics Through Rare Disease Patient Community Engagement.” The purpose of this public meeting is to highlight and build upon existing actionable approaches for engaging patients,
- [ERN ReCONNET Posters](https://reconnet.ern-net.eu/2023/12/11/ern-reconnet-posters/) - Here are the ERN ReCONNET posters presented at the conferences and meetings the Coordination Team has joined in 2023. November 2023. Poster presented at the ACR 2023 in San Diego (USA) and at the SIR 2023 in Rimini (Italy). ERN ReCONNET Poster. 2023 ACR - SIR (pdf) May -
- [Revision of the General Pharmaceutical Legislation: Impact Assessment of European Commission and EFPIA proposals](https://reconnet.ern-net.eu/2023/12/01/revision-of-the-general-pharmaceutical-legislation-impact-assessment-of-european-commission-and-efpia-proposals/) - The European Commission has proposed revisions to the Pharmaceutical Legislation, with the view to tackle unmet medical needs, competitiveness, access and affordability. This update represents a once-in-a-generation opportunity to strengthen the European biopharmaceutical ecosystem, if fit-for-purpose policy options are implemented in response to the ambitious goals set. That is why EFPIA commissioned the present Impact
- [Position paper: Together4RD position statement on collaboration between European reference networks and industry](https://reconnet.ern-net.eu/2023/12/05/position-paper-together4rd-position-statement-on-collaboration-between-european-reference-networks-and-industry/) - ERN ReCONNET is glad to share this interesting position paper focused to analyze several aspects associated with rare diseases system such as research and innovation, drug discovery and development, policy, and the role of the ERNs in tackiling the current obstacles. In particular, collaborations between the ERNs and industries are addressed by looking at ERNs
- [Financial Times forum: THE FUTURE OF PEOPLE-CENTRED HEALTH INNOVATION](https://reconnet.ern-net.eu/2023/12/05/financial-times-forum-the-future-of-people-centred-health-innovation/) - Over the last four years, health systems and society have been pushed to extremes in responding to the COVID-19 crisis. In addition, many of the most important global trends today, including climate change, digitalisation, ageing and rising inequalities, affect health systems and are impacted by them. New tools and technologies, such as AI and genomic
- [2023 International Day of Persons with Disabilities - IDPD](https://reconnet.ern-net.eu/2023/12/01/2023-international-day-of-persons-with-disabilities-idpd/) - This year, ERN ReCONNET is glad to join the annual International Day of Disabled Persons that was proclaimed in 1992 by the United Nations General Assembly resolution 47/3. The observance of the Day aims to promote an understanding of disability issues and mobilize support for the dignity, rights and well-being of persons with disabilities. It
- [#EUHPP LIVE WEBINAR State of Health in the EU 2023 Country Profiles & Synthesis Report](https://reconnet.ern-net.eu/2023/11/30/euhpp-live-webinar-state-of-health-in-the-eu-2023-country-profiles-synthesis-report/) - This #EUHPP Live Webinar will be launched on 15 December at 11.00 at a virtual event organised by the European Commission. The event will be opened by Sandra Gallina (Director-General, Directorate-General for Health and Food Safety, European Commission), followed by a joint presentation of the Country Health Profiles by Mark Pearson, Deputy Director for Employment,
- [EJP RD: Online Academic Education Course](https://reconnet.ern-net.eu/2023/11/27/ejp-rd-online-academic-education-course/) - The following Massive Open Online Courses (MOOC) “Diagnosing rare diseases: from the clinic to research and back” and “Introduction to Translational Research for Rare Diseases” are available for registration. The aim of these educational academic courses, that are free, is to better inform and train the rare disease community as well as increase awareness and
- [60° CONGRESSO NAZIONALE SIR (SOCIETA' ITALIANA DI REUMATOLOGIA) 2023](https://reconnet.ern-net.eu/2023/11/17/60-congresso-nazionale-sir-societa-italiana-di-reumatologia-2023/) - ERN ReCONNET sarà presente al 60° Congresso della Società Italiana di Reumatologia (SIR) che si svolgerà, come è ormai tradizione da diversi anni, presso il Palacongressi di Rimini, avremo il nostro booth al numero 10 (vedasi mappa per maggiori dettagli). Il Network sarà inoltre presente con i suoi esperti e membri che modereranno sessioni, presenteranno
- [LUPHPOS - Lupus Physician’ Perspective On GlucocorticoidS- Survey](https://reconnet.ern-net.eu/2023/11/19/luphpos-lupus-physician-perspective-on-glucocorticoids-survey/) - ERN ReCONNET is happy to extedn this important survey to all its members and friends. You are invited to participate in the LUPHPOS survey (Lupus Physician's Perspective on GlucocorticoidS-Survey)! Corticoids (GC) play a key role in the treatment of systemic lupus erythematosus (SLE), especially in severe manifestations. Several studies highlight the harmful effects of chronic
- [ERN ReCONNET at the ERICA & EJP RD Joint Conference](https://reconnet.ern-net.eu/2023/11/19/ern-reconnet-at-the-erica-ejp-rd-joint-conference/) - ERN ReCONNET is glad to take part in the ERICA and EJP RD joint Conference that will take place in Amsterdam on November 21st. This is going to be a unique opportunity to explore the European and international rare disease research ecosystems, we would connect and consolidate our network with relevant stakeholders in the healthcare
- [ERN ReCONNET - Newsletter n. 21](https://reconnet.ern-net.eu/2023/11/07/ern-reconnet-newsletter-n-21/) - The new ERN ReCONNET Flash News is out! Check it out and connect with us to get the latest updates on ACR 2023, we will be live from San Diego!
- [Summary report of the TRANSFORM 2023 Conference](https://reconnet.ern-net.eu/2023/11/07/summary-report-of-the-transform-2023-conference/) - How can policymakers secure the promise of advanced therapies for patients over the next 6 months? Read the summary report of the TRANSFORM 2023 Conference to learn what our multi-stakeholder Alliance members and MEP Interest Group think is needed from decision-makers now, and in the next EU mandate. The current mandate of the European Parliament
- [One Health Conference – One Health for All, All for One Health](https://reconnet.ern-net.eu/2023/11/07/one-health-conference-one-health-for-all-all-for-one-health/) - The recent epidemics and pandemics, in particular COVID-19, have made it unmistakably clear that human, animal, plant and environmental health cannot be dealt with separately, but need to be addressed in a ‘One Health’ approach. Their interdependencies need to be better acknowledged and require work at the interfaces in a multisectoral, transdisciplinary and an integrated
- [Beacon for Rare Diseases: The London Rare Disease Showcase 2023](https://reconnet.ern-net.eu/2023/11/06/beacon-for-rare-diseases-the-london-rare-disease-showcase-2023/) - Join Beacon for Rare, live and in-person for The London Rare Disease Showcase that aims to shed light on the latest innovations and advancements occurring in the field of rare diseases, with special emphasis on the vibrant rare disease landscape in the UK’s capital. The event is scheduled for 27th November 2023 from 9:30 to 17:00,
- [B1MG project draws to a close](https://reconnet.ern-net.eu/2023/11/02/b1mg-project-draws-to-a-close/) - The Beyond 1 Million Genomes project (B1MG) has been a €4M three-year Coordination and Support Action to support the design and testing phase of the European 1+Million Genomes (1+MG) initiative. This initiative facilitates signatory countries to realise a practice of personalised medicine and health, based upon a shared ‘framework’ and the infrastructure to safely access
- [ERNs: A flagship EU action for patients with rare diseases](https://reconnet.ern-net.eu/2023/10/30/erns-a-flagship-eu-action-for-patients-with-rare-diseases/) - In the European Union (EU) alone, up to 36 million people are living with one of the over 6,000 distinct rare diseases. Each rare disease, however, has a low prevalence. The definition of a rare disease in the EU is one that affects fewer than 1 person out of 2,000. Currently, there is no known
- [XpanDH Webinar: The Risks for Europe Without a European Health Data Space](https://reconnet.ern-net.eu/2023/10/31/xpandh-webinar-the-risks-for-europe-without-a-european-health-data-space/) - XpanDH will host its fourth webinar titled ‘Unlocking the Potential: The European Health Data Space and the Digital Future of European Healthcare‘ on Thursday 16 November 2023, 14:00 ​- 15:00 CET​​ . In September 2020 the announcement of a new legislative proposal for a European Health Data Space (EHDS) was made by European Commission President Ursula von der
- [Free online course. "MOOC From Lab to Clinic: Translational Research for Rare Diseases"](https://reconnet.ern-net.eu/2023/10/30/free-online-course-mooc-from-lab-to-clinic-translational-research-for-rare-diseases/) - The French Foundation for Rare Diseases has announced the opening of a new facilitation window of the MOOC From Lab to Clinic: Translational Research for Rare Diseases on October 9th. This update will be available until December 2nd 2023. In this course, you'll get to learn from experts about how medicines are developed, tested in clinical trials, approved by regulators, and
- [ORPHANET latest resources](https://reconnet.ern-net.eu/2023/10/26/orphanet-latest-resources/) - Orphanet has developed and produced several important resources for the rare disease ecosystem. Here is a list of the latest news: ORPHAcodes. Rare disease-specific coding systems are key for data collection and analysis, ORPHAcodes recognise more than 6,000 RD - implementing them fulfills patient needs, aids monitoring, and more. Read about the current state of ORPHAcode
- [IRDiRC Drug Repurposing Guidebook](https://reconnet.ern-net.eu/2023/10/25/irdirc-drug-repurposing-guidebook/) - The International Rare Diseases Research Consortium (IRDiRC) has developed a new guidebook to invigorate drug repurposing for rare diseases. Drug repurposing has often been suggested as a critical solution for developing more therapies for rare diseases. However, repurposing approaches for rare diseases has not been as impactful as anticipated. With the aim of addressing the challenges
- [ERN ReCONNET joins the World Scleroderma Day](https://reconnet.ern-net.eu/2023/06/29/ad-ssc/) - ERN ReCONNET is happy to join the World Scleroderma Day in collaboration with FESCA. As ERN ReCONNET we are proud to have developed a dedicated Systemic Sclerosis (SSc) webpage where relevant and important information, documents, references, and ERN ReCONNET webinars are available. In details, two webinars about “The Raynaud’s phenomenon” and “Diagnosis and classification of
- [L'ERN ReCONNET e il suo primo congresso scientifico a Brussel](https://reconnet.ern-net.eu/2023/06/27/lern-reconnet-e-il-suo-primo-congresso-scientifico-a-brussel/) - La Commissione Europea nel 2017 lanciò il progetto dei centri di riferimento europei (24 ERNs – European Reference Networks) volto alla creazione di un ecosistema logistico organizzativo su scala continentale che potesse dare risposte concrete ai pazienti rari e al tempo stesso favorire la ricerca, la collaborazione tra centri specialistici e istituzioni affinché nessuna persona
- [Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind](https://reconnet.ern-net.eu/2023/08/25/engaging-the-un-system-and-member-states-to-achieve-uhc-for-plwrd-a-blueprint-for-leaving-no-one-behind/) - RDI and the Permanent Mission of Spain to the United Nations in New York are organizing the hybrid event “Engaging the UN System and Member States to Achieve UHC for PLWRD: A Blueprint for Leaving No One Behind” on Thursday, 21 September, 2023, from 13:00 to 14:30 EST. The event is co-organized with the NGO Committee for Rare Diseases, EURORDIS-Rare Diseases Europe,
- [New ERN ReCONNET webinar: Spectrum of skin manifestations in dermatomyositis](https://reconnet.ern-net.eu/2023/09/22/new-ern-reconnet-webinar-spectrum-of-skin-manifestations-in-dermatomyositis/) - This webinar focuses on dermatomyositis (DM), an auto-immune disease, characterized by distinct skin lesions and a heterogeneous constellation of systemic manifestations, including myositis and interstitial lung disease. Guest speaker will be Dr Petra De Haes, she will share with us important insights on DM and will be moderated by Dr. Jiri Vencoksky. A good knowledge
- [ERN ReCONNET bursaries for EULAR 2023](https://reconnet.ern-net.eu/2022/12/22/bursaries-for-eular-2023/) - We are very happy to announce that the ERN ReCONNET Young Working Group is launching a call for applications to receive bursaries to attend the EULAR 2023 congress. There are 3 bursaries of 700€ available for healthcare professionals under 40 years of age working in ERN ReCONNET centres (Full Members or Affiliated Partners) and 4
- ["LUNG INVOLVEMENT and RHEUMATIC DISORDERS: from bench to bedside, from antigens to disease" Congress](https://reconnet.ern-net.eu/2023/08/21/lung-involvement-and-rheumatic-disorders-from-bench-to-bedside-from-antigens-to-disease-congress/) - ERN ReCONNET is pleased to invite you to this Congress that will be held at the UNIVERSITÀ DEGLI STUDI DI PAVIA (Pavia, Italy) from September 7th to 9th; as Network we are produ to support this initiatives and contribute to its dissemination. In particular, the Congress will allow the exchange of experience and expertise in
- [Revision of the EU general pharmaceuticals legislation](https://reconnet.ern-net.eu/2023/08/29/revision-of-the-eu-general-pharmaceuticals-legislation/) - The public consultation on the revision of the EU General Pharmaceuticals legislation is open until October 16th 2023. As part of the EU pharmaceuticals strategy, and drawing lessons from the COVID-19 pandemic, the European Commission plans to evaluate and revise the EU’s general legislation on medicines for human use to ensure a future-proof and crisis-resistant medicines
- [Challenges in Cancer Care](https://reconnet.ern-net.eu/2023/08/29/challenges-in-cancer-care/) - Under the Spanish Presidency of the Council of the European Union, the Ministry of Health of Spain will hold a High-Level Conference about “Challenges in Cancer Care”. Cancer continues to be one of the leading causes of morbi-mortality in the world. The data shows the enormous impact of cancer for the people who suffer from
- [ERN ReCONNET webinar: "VEXAS and Relapsing Polychondritis (RP)"](https://reconnet.ern-net.eu/2023/09/04/ern-reconnet-webinar-vexas-and-relapsing-polychondritis-rp/) - The ERN ReCONNET webinar season is back and we are proud to annouce our first and upcoming webinar: "VEXAS and Relapsing Polychondritis (RP)" with Dr Marcela Ferrada from National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) as speaker. Moderator will be Dr Raquel Faria. Webinar is scheduled for Sept 6th at 16 CEST. Registration is free
- [ERICA Webinar: REMEDI4ALL / drug repurposing and clinical trial readiness by Anton Ussi](https://reconnet.ern-net.eu/2023/09/22/erica-webinar-remedi4all-drug-repurposing-and-clinical-trial-readiness-by-anton-ussi/) - This webinar will discuss challenges associated with getting ready for and conducting clinical trials in drug repurposing, with a focus on differences between trial requirements for future on-label or off-label use. The discussion will also highlight key services and tools available to the community, as well as the REMEDi4ALL projects support offering. The webinar is
- [NEW ERN RECONNET WEBINAR. Systemic sclerosis (SSc) patients and doctors: A win win alliance](https://reconnet.ern-net.eu/2023/10/17/new-ern-reconnet-webinar-systemic-sclerosis-ssc-patients-and-doctors-a-win-win-alliance/) - ERN ReCONNET is glad to announce its new webinar on the win-win alliance between Systemic Sclerosis (SSc) patients and doctors, featuring Prof. Vanessa Smith and Prof. Marco Matucci Cerinic as our SSc Disease Coordinators together with ERN ReCONNET ePAG representatives Ilaria Galetti and Sue Farrington. The webinar aims at illustrating that most of the decisions
- [Open Letter to the EU institutions and our national governments to stand by the ERNs](https://reconnet.ern-net.eu/2023/10/05/open-letter-to-the-eu-institutions-and-our-national-governments-to-stand-by-the-erns/) - ERN ReCONNET supports the Open Letter to the EU institutions and our national governments to stand by the European Reference Networks (ERNs) as our Network Coordinator, Prof. Marta Mosca, together with Ilaria Galetti and Charissa Frank, as ERN ReCONNET European Patient Advocacy Group (ePAGs) representative signed the document. This is an official "call on the EU
- [EULAR 2024 | CONGRESS ABSTRACT SUBMISSION](https://reconnet.ern-net.eu/2023/10/16/eular-2024-congress-abstract-submission/) - EULAR has open its abstract submission to EULAR 2024, the European Congress of Rheumatology. Every year EULAR invites abstract submitters from all over the globe to present their work at the European Congress of Rheumatology. In 2024, there will be a Congress with fully onsite programme. With the Abstract-related programme, all accepted abstract for presentation will
- [OrphaNews is available](https://reconnet.ern-net.eu/2023/10/18/orphanews-is-available/) - The new edition of OrphaNews is now available. Check the latest news on rare diseases from all over the world and organized by topics and regions. In particular, in this issue you will find the editorial "Rare Diseases International (RDI) and partners call on UN Member States to realise UHC for the global rare disease
- [VASCERN Summer School](https://reconnet.ern-net.eu/2023/10/18/vascern-summer-school/) - The 1st Edition of the VASCERN Summer School on Rare Vascular Diseases will take place from September 23 to 28, 2024. This immersive learning opportunity will follow a hybrid format, combining on-site classes in Paris (France) with a mandatory online course. The VASCERN Summer School is open to medical students (e.g., undergrad, masters, PhD) as
- [ERICA Webinar:“Bridging the gap between promising preclinical data and a successful clinical trial”](https://reconnet.ern-net.eu/2023/10/18/erica-webinarbridging-the-gap-between-promising-preclinical-data-and-a-successful-clinical-trial/) - This interesting ERICA webinar is focused on the importance of translational research referred to “bench-to-bedside” by showcasing two successful models for bridging the gap between preclinical and clinical research. Speakers will be the Paediatric Oncologist Professor Gilles Vassal from Institute Gustave Roussy, distinguished member of the ERNPaedCan, which will present the ACCELERATE, and Joanne Lee
- [ERN ReCONNET KICK-OFF MEETING REPORT](https://reconnet.ern-net.eu/2018/02/26/ern-reconnet-kick-off-meeting-report/) - 26th-28th May 2017 | Pisa, Italy 26th May 2017 AULA MAGNA SCUOLA MEDICA, Via Roma 55, Pisa 27th and 28th May GRAND HOTEL DUOMO PISA Via Santa Maria, 94 - 56126 PISA ERN ReCONNET KICK-OFF MEETING REPORT Introduction The 24 European Reference Networks were formally launched on March 9th 2017, during the 3rd on ERNs that took place in
- [ERN ReCONNET EULAR 2017 MEETING REPORT](https://reconnet.ern-net.eu/2018/02/26/ern-reconnet-eular-2017-meeting-report/) - 15th June 2017 | Madrid, Spain Introduction After the ERN ReCONNET Kick-off Meeting held in Pisa 26th-28th May 2017, the members of the Network met again on 15th June during the EULAR 2017 congress in Madrid. The meeting main objectives were: Steering Committee meeting: report on news on ERN ReCONNET General Assembly meeting: discussion of methods and
- [Newsletter Images (do not remove)](https://reconnet.ern-net.eu/2018/09/24/newsletter-images-do-not-remove/) - This is a placeholder for the Newsletter plugin images. You may edit and reuse this post but do not remove it.
- [ERN ReCONNET WP3 STEP3 MEETING REPORT](https://reconnet.ern-net.eu/2018/02/26/ern-reconnet-wp3-step3-meeting-report/) - 5th November 2017 | Hotel Hilton Bayfront, San Diego, USA Introduction After the ERN ReCONNET Meeting held in Madrid during the EULAR 2017 congress, the members of the Network met again on 5th November 2017 at the Hotel Hilton Bayfront in San Diego, during the ACR 2017 annual meeting. The meeting main objectives were: Presentation of WP3
- [2nd ERN ReCONNET PLENARY MEETING REPORT](https://reconnet.ern-net.eu/2018/02/26/5108/) - 4th-5th-6th February 2018 Scuola Superiore Sant’Anna, Pisa, Italy Introduction The second ERN ReCONNET plenary meeting took place on 4th, 5th and 6th February 2018 in Pisa, at the Sant’Anna School of Advanced Studies. The meeting focused on the following activities: Report and overview of the work done in the first year WP4, 1st year. Definition of IT environment.
- [8th EULAR Course on Capillaroscopy](https://reconnet.ern-net.eu/2018/07/16/8th-eular-course-on-capillaroscopy-in-rheumatic-diseases/) - 8th EULAR Course on Capillaroscopy in Rheumatic Diseases Genoa, 13th-15th September 2018 The early diagnosis of Connective Tissue Diseases has been one of the most important achievement in Rheumatology. The aim of the 8th intensive and interactive EULAR Course on Capillaroscopy is to provide all participants with an update on the power of the safe and non-invasive
- [International Symposium on the Ehlers-Danlos Syndromes](https://reconnet.ern-net.eu/2018/07/17/international-symposium-on-the-ehlers-danlos-syndromes/) - International Symposium on the Ehlers-Danlos Syndromes 26th-29th September 2018, Ghent, Belgium The International Symposium on the Ehlers-Danlos Syndromes (EDS) is a state-of-the-art meeting in which new research on clinical advances and the molecular and pathogenic mechanisms underlying EDS and related syndromes is discussed. The general theme of the 2019 meeting is “Interaction and signaling: recurrent themes
- [ERN ReCONNET dissemination materials](https://reconnet.ern-net.eu/2018/09/26/ern-reconnet-dissemination-materials/) - Leaflets and brochures realised by the ERN ReCONNET
- [European Commission flyers (2017)](https://reconnet.ern-net.eu/2018/10/01/european-commission-flyers/) - European Commission flyers on ERNs English Dansk Polski Deutsch Eesti Português Français Ελληνικά Română Nederlands Latviešu Slovenčina Español Lietuvių Slovenščina Italiano Magyar Suomi Hrvatski Български Svenska Čeština Malti
- [European Commission brochures (2017)](https://reconnet.ern-net.eu/2018/10/01/european-commission-brochures-on-erns/) - European Commission brochures English Dansk Polski Deutsch Eesti Português Français Ελληνικά Română Nederlands Latviešu Slovenčina Español Lietuvių Slovenščina Italiano Magyar Suomi Hrvatski Български Svenska Čeština Malti Norwegian
- [RMD Open Supplement on Clinical Practice Guidelines](https://reconnet.ern-net.eu/2018/10/21/rmd-open-supplement-on-state-of-the-art-on-clinical-practice-guidelines/) - We proudly announce that the Supplement on State of the Art on clinical practice guidelines on rare and complex Connective Tissue Diseases is now available on RMD Open. This is one of the first results of the collaboration of Healthcare Providers and Patients in the framework of the European Reference Network on Rare and Complex
- [EURORDIS Summer School (10-14 June 2019, Barcelona)](https://reconnet.ern-net.eu/2018/11/12/eurordis-summer-school-2019/) - The next edition of the EURORDIS Summer School face-to-face training will take place 10-14 June 2019, in Barcelona. You can apply here for this training. The deadline for applications is 15th November 2018. The results of the applications will be communicated by end January 2019. The Summer School is made up of one week of face-to-face training
- [4th conference on European Reference Networks ERNs in action](https://reconnet.ern-net.eu/2018/11/22/4th-conference-on-erns/) - The 4th Conference on European Reference Networks "ERNs in action" will be held on 21 and 22 November 2018 in Brussels, Belgium. ERN ReCONNET will be present to the Conference with 10 delegates. This two-day event will gather more than 400 participants – National authorities, healthcare providers members of the ERNs, health professionals, hospital managers,
- [55th Congress of Italian Society of Rheumatology (21-24 November 2018)](https://reconnet.ern-net.eu/2018/11/22/55th-congress-sir/) - The 55th Congress of Italian Society of Rheumatology will be held from 21st to 24th November 2018 in Rimini, Italy. ERN ReCONNET will be present to the Congress with a booth. This is the main event for the italian rheumatologists and this year ERN ReCONNET is starring in the International Symposium on Rare Diseases that will be
- [New ERN information flyer and information video released](https://reconnet.ern-net.eu/2018/11/27/informative-material-2018/) - During the 4th European Reference Networks Conference, the European Commission has released a new version of the ERN information flyer and of the ERN information video. They both aim at informing patients and healthcare professionals about how the ERNs work and introduce how a doctor will convene in “virtual” panels of medical experts from across
- [3rd ERN ReCONNET PLENARY MEETING (PISA, 13-14 JANUARY 2019)](https://reconnet.ern-net.eu/2019/01/08/3rd-plenary-meeting/) - The 3rd Plenary Meeting of the ERN ReCONNET will be held from 13th to 14th January 2019 in Pisa, at the Sant’Anna School of Advanced Studies. The Meeting will focus on the following topics: the patients’ point of view from ePAGs, the next call for new HCPs and Affiliated Partners, the ERN Continuous Monitoring, the Clinical Patient Management
- [Patients' survey on ethical, legal and privacy issues](https://reconnet.ern-net.eu/2019/01/23/patients-survey-ethical/) - We have recently developed, together with the precious help of the ERN ReCONNET European Patient Advocacy Group (ePAG), an online survey to collect the feedback of the community of patients affected by rare and complex connective tissue diseases on different aspects related to ethical, legal and privacy issue, and on cross-border healthcare. Thanks to our ePAGs, the survey is
- [EURORDIS Membership Meeting 17-18 May 2019 Bucharest](https://reconnet.ern-net.eu/2019/05/17/emm2019/) - The EURORDIS Membership Meeting (EMM) will take place on 17 - 18 May 2019 in Bucharest. Each year, EURORDIS holds the General Assembly attended by close to 200 of its member organisations. These events are excellent networking opportunities for patients to meet other patient advocates from around the world. It is also a moment to get
- [CPMS FAQ and Answers webinar (23rd May 2019 at 14:00 CET)](https://reconnet.ern-net.eu/2019/05/17/cpms-faq-a-webinar-23rd-may-2019-at-1400-cet/) - The Clinical Patient Management System (CPMS) is the IT Platform for Clinical Consultations between ERN Members. The CPMS aims at supporting ERNs in improving the diagnosis and treatment of rare or low prevalence complex diseases across national borders of Member States in Europe. The CPMS is a secure Software as a Service (SaaS) that enables
- [EULAR European Congress of Rheumatology (12-15 June 2019, Madrid)](https://reconnet.ern-net.eu/2019/05/17/eular-european-congress-of-rheumatology-12-15-june-2019-madrid/) - EULAR will take its Annual Scientific Congress to Madrid, Spain, from 12-15 June in 2019. The annual EULAR Congresses comprise the major event in the calendar of world rheumatology. EULAR 2019 will provide an unique event for the exchange of scientific, clinical and patientfocussed information on a global basis, and will offer a platform to facilitate
- [ERN ReCONNET Dissemination Materials (2019)](https://reconnet.ern-net.eu/2019/06/28/dissemination-2019/) - Patients' involvement How to get involved CPMS This leaflet describes the role of patients in the ERN ReCONNET, their activities inside the ERN, how to become an ePAG representative or an ePAG member organisation. This leaflet describes how to get involved in the ERN ReCONNET activities, as patient/patients’ organisation, as healthcare provider, or as an
- [External collaborating Experts](https://reconnet.ern-net.eu/2019/08/01/external-collaborating-experts/) - The ERN ReCONNET welcomes the participation of individual experts in the field of rCTDs in order to share existing knowledge and to improve the lives of people affected by rCTDs. External experts may be individual clinicians or healthcare professionals with an expertise in the field of rCTDs that request to participate to the Network activities.
- [Call for new members to join existing ERNs soon launched](https://reconnet.ern-net.eu/2019/08/01/call-new-members/) - The European Commission will launch in the coming weeks the first call for new members to join existing 24 ERNs, following the adoption of the Commission Implementing Decision (EU) 2019/1269 of 26 July 2019 amending Decision 2014/287/EU. The concrete date for the opening and closing of the call will be announced soon. You can find
- [Documentation to prepare applications for the 2019 ERN Call](https://reconnet.ern-net.eu/2019/09/02/3keydocs4call/) - Three key documents are now available for candidates to prepare their applications for the imminent Call for membership to existing European Reference Networks. The “ERN Assessment manual for applicants: description and procedures” provide the applicants with an overview of the assessment and the application process to join an existing ERN, called “Assessment programme of the
- [Systemic Sclerosis Patients' Stories: tell us your experience](https://reconnet.ern-net.eu/2019/09/04/ssc-stories/) - Among other initiatives, the ERN ReCONNET is mapping the existing patient’s pathways followed for every rare connective tissue diseases (rCTDs) covered by ERN ReCONNET in all the Healthcare Providers of the Network. The aim of this work is to identify the current practice across the different ERN ReCONNET centres and identify eventual challenges and best
- [How to apply to become a member of an ERN?](https://reconnet.ern-net.eu/2019/09/16/how-to-apply/) - The process how to become a member of an ERN is defined in the Implementing Acts: a healthcare provider (HCP) wishing to become a member of an ERN will have to pass an assessment process based on the criteria in Delegated Decision (2014/286/EU) Annex II, on the Implementing Decision (2014/287/EU) and on the amendment to the Implementing Decision (2019/1269). The membership application
- [call for new members to join existing 24 ERNs](https://reconnet.ern-net.eu/2019/09/27/call19/) - The first call for new members to join existing 24 ERNs is open until 30 of November 2019. HOW TO APPLY TO BECOME A MEMBER OF AN ERN? The membership application process will involve several steps: Review the information that is included on the Commission webpage related to the European Reference Networks and the applicable
- [Live Webinar "The real roles of Vitamin D in Connective Tissue Diseases"](https://reconnet.ern-net.eu/2019/12/06/webinar1901/) - Save the date! Register to the first ERN ReCONNET live webinar for healthcare professionals "The real roles of Vitamin D in Connective Tissue Diseases" by professor Maurizio Cutolo (University of Genoa). 10th December 2019 at 1:30 PM (CET) → Register here Maurizio Cutolo is Past President of the European League Against Rheumatism (EULAR) and Past
- [Our Network Governance](https://reconnet.ern-net.eu/2019/12/20/our-network-governance/) - contenuto da inserire prova prova prova
- [Our Network Affiliated Partners](https://reconnet.ern-net.eu/2019/12/20/our-network-affiliated-partners/) - The purpose of European Reference Networks (ERNs) is to enable the sharing of expertise and to improve access to care for patients across the European Union, especially for complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. In order for ERNs to deliver genuine added value to
- [Our Network How to join us](https://reconnet.ern-net.eu/2019/12/20/our-network-how-to-join-us/)
- [Patients Patients Involvement](https://reconnet.ern-net.eu/2019/12/20/patients-patients-involvement/)
- [Our Activities Virtual Consultation](https://reconnet.ern-net.eu/2019/12/20/our-activities-virtual-consultation/)
- [Our Activities Guidelines](https://reconnet.ern-net.eu/2019/12/20/our-activities-guidelines/)
- [Our Activities Registry](https://reconnet.ern-net.eu/2019/12/20/our-activities-registry/)
- [Our Activities Webinars](https://reconnet.ern-net.eu/2019/12/20/our-activities-webinars/)
- [Our Activities Surveys](https://reconnet.ern-net.eu/2019/12/20/our-activities-surveys/)
- [Our Activities Gallery](https://reconnet.ern-net.eu/2019/12/20/our-activities-gallery/)
- [Live webinar "The Raynaud’s phenomenon"](https://reconnet.ern-net.eu/2020/01/10/live-webinar-the-raynauds-phenomenon/) - Save the date! Register to the first 2020 ERN ReCONNET webinar "The Raynaud’s phenomenon" by professor Vanessa Smith (Ghent University). 14th January 2020 at 12:30 PM (CET) → Register here In this Webinar the Raynaud’s phenomenon (definition, its prevalence, primary and secondary Raynaud’s phenomenon, how to distinguish a primary from a secondary Raynaud’s phenomenon, role
- [Live webinar "Pregnancy in rCTDs"](https://reconnet.ern-net.eu/2020/01/23/webinar-pregnancy-rctds/) - Save the date! Register to the ERN ReCONNET webinar “Pregnancy in rare and complex connective tissue and musculoskeletal diseases” by Silvia Aguilera (ePAGs representative for Antiphospholipid Syndrome) and professor Marta Mosca (Azienda Ospedaliero Universitaria Pisana). 27th January 2020 at 15:30 PM (CET) → Register here In this Webinar Silvia Aguilera will provide the experience of a patient
- [ERN ReCONNET lights the Leaning Tower of Pisa](https://reconnet.ern-net.eu/2020/02/27/leaning-tower/) - The colours and the logo of the World Rare Diseases Day will be projected from 6.30 pm to 11 pm on 29th February 2020 on the Leaning Tower of Pisa, in order to spread public and political awareness of rare diseases all over the world through a worldwide known icon. This event, made possible thanks
- [EULAR Guidance for patients with RMDs about COVID-19 outbreak](https://reconnet.ern-net.eu/2020/03/19/eular-covid/) - The European League Against Rheumatism (EULAR) developed a Guidance for people with Rheumatic Musculoskeletal Diseases (RMDs) about COVID-19 outbreak. Click on the image to download the ERN ReCONNET infographic based on the EULAR Guidance.
- [European Survey on Patient Education](https://reconnet.ern-net.eu/2020/03/25/espe/) - Lupus Europe and ERN ReCONNET Patient representatives have launched a short survey to better understand how we can improve quality of life for people living with a rheumatic condition through better patient education. If you are a patient living with a Rheumatic condition or any other Chronic or rare disease, simply follow this link, select
- [Updates on COVID-19 outbreak](https://reconnet.ern-net.eu/2020/03/25/covid19/) - COVID-19 is a disease caused by a new type of coronavirus (SARS-CoV-2), first identified in December 2019 in the Chinese municipality of Wuhan. At the end of February 2020, Italy reported a significant increase of COVID-19 cases concentrated in the northern regions of the country. By March 2020, all EU member states had reported quickly increasing COVID-19 cases. The current COVID-19
- [Webinar "Sex hormones and COVID-19: how is the game?"](https://reconnet.ern-net.eu/2020/05/18/live-webinar-sex-hormones-and-covid-19-how-is-the-game/) - Save the date! Register to the ERN ReCONNET live webinar for healthcare professionals “Sex hormones and COVID-19: how is the game?” by professor Maurizio Cutolo (University of Genoa). 1st June 2020 at 2:00 PM (CET) → Register here Already from the earliest reports regarding the lethality risk after the COVID-19 infection, it is confirmed a
- [Webinar EDS Syndrome: a disorder with many faces](https://reconnet.ern-net.eu/2020/06/13/webinar-eds-syndrome-a-disorder-with-many-faces/) - The Ehlers-Danlos syndromes comprise a clinically and genetically heterogeneous group of heritable connective tissue disorders, which are characterized by joint hypermobility, skin hyperextensibility, and tissue friability. The 2017 International EDS Classification recognizes 13 EDS subtypes, for which defects have been identified in 19 different genes that code for extracellular matrix proteins. Some of these conditions
- [Clinical practice guidelines: what do you need to know](https://reconnet.ern-net.eu/2020/07/20/cpg-webinar/) - Save the date! Register to the ERN ReCONNET live webinar for patients “Clinical practice guidelines: what do you need to know” by Ilaria Galetti (European Patient Advocacy Group representative) and Rosaria Talarico (Azienda Ospedaliero Universitaria Pisana). 20th July 2020 at 3:00 PM (CET) → Register here The webinar will provide an overview on what Clinical Practice Guidelines are and
- [Skin manifestations in EDS: what are they and how to manage them](https://reconnet.ern-net.eu/2020/10/06/malfait_sulli/) - Register to the ERN ReCONNET live webinar for healthcare professionals “Skin manifestations in EDS: what are they and how to manage them” by professors Fransiska Malfait (Ghent University) and Alberto Sulli (University of Genoa). 6th October 2020 at 3:00 PM (CET) → Register here Skin manifestations, such as skin hyperextensibility, skin fragility, poor wound healing, abnormal scar formation and easy
- [Webinar on COVID-19 and Rare Connective Tissue and Musculoskeletal diseases](https://reconnet.ern-net.eu/2020/06/12/webinar-covid-19-ec/) - In the context of the “COVID-19 Clinical Management Support System” launched by the European Commission, DG SANTE organises a series of webinars to support clinicians and other healthcare professionals at the frontline of the care of COVID-19 patients. These webinars will bring the expertise and recommendations of several experts from the 24 ERNs in the
- [The Rheumatological point of view of EDS Syndromes: Articular manifestations](https://reconnet.ern-net.eu/2020/07/20/the-rheumatological-point-of-view-of-eds-syndromes-articular-manifestations/) - Register to the ERN ReCONNET live webinar for healthcare professionals “The Rheumatological point of view of EDS Syndromes: Articular manifestations” by professor Maurizio Cutolo (University of Genoa). 24th July 2020 at 2:00 PM (CET) → Register here How to recognize the Ehlers-Danlos (EDS ) syndromes through articular symptoms? Among the 13 EDS subtypes actually described, 12 of them
- [Le ERN verso l'integrazione (30 novembre 2021)](https://reconnet.ern-net.eu/2021/11/23/ern-integration-30-november/) - I perché di questo evento Nel febbraio 2020, per celebrare la Giornata Mondiale delle Malattie Rare, le tre reti ERN (European Reference Networks) a coordinamento italiano (ERN ReCONNET, MetabERN e ERN Bond), Uniamo FIMR Onlus, ePAG Italia e il Centro Nazionale Malattie Rare dell’Istituto Superiore di Sanità hanno organizzato a Pisa un convegno in presenza,
- [10th UDNI Conference (31 January- 1 February 2022)](https://reconnet.ern-net.eu/2022/01/21/10th-udni-conference-31-january-1-february-2022/) - The 10th Undiagnosed Diseases Network International Conference will be held in Turin (Italy) on 31 January - 1 February 2022. The event will be hybrid. Additional info and registration to the upcoming 10th UDNI conference at udni.torino2022@gmail.com You can find here the program of the event.
- [25th Congress on Immune Pathology and Orphan Diseases](https://reconnet.ern-net.eu/2022/01/21/25th-congress-on-immune-pathology-and-orphan-diseases-27-29-january-2022/) - The 25th Congress on Immune Pathology and Orphan Diseases will be held in Turin on 27-29 January 2022. The event will be hybrid. Additional info on the upcoming 25th Congress here and at patologiaimmune@seleneweb.com You can find here the program of the event.
- [CPMS National Hubs brochures](https://reconnet.ern-net.eu/2022/02/02/cpms-nh-brochures/) - The informative brochures on CPMS National Hubs have been translated by the National Hubs responsibles in the main european languages (deutsch, french, italian, dutch, portuguese, romanian). Click on the image to open the CPMS National Hubs Brochures page where you can find the documents to dowload.
- [ERN ReCONNET lights up the Leaning Tower of Pisa](https://reconnet.ern-net.eu/2022/02/28/ern-reconnet-lights-up-the-leaning-tower-of-pisa/) - ERN ReCONNET renews its appointment with the illumination of the Leaning Tower of Pisa on the occasion of World Rare Disease Day to raise awareness and generate change for the 300 million people worldwide living with a rare disease, their families and carers. As was the case in 2020 and 2021, on Monday 28 February from
- [We are hiring!](https://reconnet.ern-net.eu/2023/03/31/we-are-hiring/) - ERN ReCONNET is hiring! We are looking for 3 new members of our Team: • Business support manager • Registry Project Manager • Registry Researcher You can apply and find all the details at these links: • Business support manager (english version on pages 3-4) • Registry Project Manager (english version on pages 3-4) • Registry
- [ERN ReCONNET at EULAR 2023!](https://reconnet.ern-net.eu/2023/05/29/ern-reconnet-at-eular-2023/) - ERN ReCONNET will be at the EULAR Congress that will be held in Milan, Italy from May 31st to June 3rd. ERN ReCONNET will have a dedicated booth in Z7, visit us. The Coordination Team look forward to meeting you and sharing with you its latest network news and initiatives; also, ERN ReCONNET cool gadgets

## Pages

- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Home new](https://reconnet.ern-net.eu/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Applications open for the new ERN ReCONNET accredited course on Transition of care in rCTDs – more info: link ERN ReCONNET ERN ReCONNET is the European Reference Network
- [Patients Organisations IgG4](https://reconnet.ern-net.eu/patients-organisations-igg4/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: IgG4-related disease IgG4 Patients’ Organisations Europe European Federation IgG4-RD Spain Asociación Española de pacientes con Enfermedad Asociada a IgG4: AE-IgG4 The dedicated ERN ReCONNET YouTube Playlist that collects webinars focused on IgG4 related disease can be seen here.
- [epag jose BALLARIN CASTAN](https://reconnet.ern-net.eu/epag-jose-ballarin-castan/) - ERN ReCONNET ePAGs Jose Ballarin Castan Jose Ballarin Castan is an ERN ReCONNET ePAG representative for IgG4-related disease (IgG4-RD). He is a patient representative for IgG4 RD in three patient organizations, the IgG4-RD European Federation, the Asociación Española de pacientes con Enfermedad Asociada a IgG4: AE-IgG4 and the Spanish Federation For Rare Diseases (FEDER) in
- [Disease IgG4](https://reconnet.ern-net.eu/disease-igg4/) - ERN ReCONNET Disease Info Disease: IgG4-related disease IgG4-related disease (IgG4-RDs) Overview – What is IgG4-RD? Clinical overview of the disease IgG4-related disease (IgG4-RD) is characteri­zed by mass-forming lesions with a relapsing-re­mitting course that might lead to organ failure if left untreated. This fibro-inflammatory disorder is named for the accumulation of IgG4 secreting plasma cells in
- [Scientific Publications](https://reconnet.ern-net.eu/publications/) - ERN ReCONNET Activities ERN ReCONNET Scientific Publications Development and validation of a relapsing polychondritis disease-specific quality of life instrument (ERN ReCONNET RP-QoL) Arnaud L, Sander O, Damian L, Pamfil C, Crisafulli F, Faria R, Silva-Ribeiro S, Piette JC, Mathian A, Ferrada M, Shimizu J, Sharma A, Kawka L, Sztejkowski C, Dusing C, Rose T, Lamas
- [Members - NL - University Medical Center Utrecht - Utrecht](https://reconnet.ern-net.eu/members-nl-university-medical-center-utrecht-utrecht/) - ERN ReCONNET Our Network University Medical Center Utrecht Universitair Medisch Centrum Utrecht City, Country: Utrecht, the Netherlands Website: https://www.umcutrecht.nl Healthcare Provider Representatives: Dr. Marloes Heijstek, Dr. Janneke Tekstra Roles in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Sjögren’s Disease (SjD), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc). Contacts:
- [ERN ReCONNET Task Force Transition of Care](https://reconnet.ern-net.eu/ern-reconnet-task-force-transition-of-care/) - ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases (rCTDs) is dedicated to improving rCTDs patient care across Europe. As part of its initiatives, ERN ReCONNET is also working on improving transitional care for European patients living with rCTDs. Transition of Care, also known as transition, refers to a meticulously planned
- [ERN ReCONNET accredited course on Transition of care in rCTDs](https://reconnet.ern-net.eu/transition-of-care-course/) - ERN ReCONNET accredited course on Transition of care in rCTDs Course overview The ERN ReCONNET Transition of Care Accredited Training in Rare and Complex Connective Tissue Diseases (rCTDs) is a structured educational programme developed by ERN ReCONNET to support healthcare professionals involved in the transition of adolescents and young adults from paediatric to adult care.
- [webinar](https://reconnet.ern-net.eu/webinar/) - Educational ALL ERN ReCONNET Webinars ERN ReCONNET Webinars ERN ReCONNET organises a wide range of educational webinars on rare and low-prevalence connective tissue and musculoskeletal diseases. All webinars organised by ERN ReCONNET are freely available on the dedicated YouTube channel – make sure you don’t miss any of our webinars, click here to subscribe to
- [Disease-SjD](https://reconnet.ern-net.eu/disease-ss/) - ERN ReCONNET Disease Info Disease: Sjögren’s Disease Sjögren’s Disease (SjD) Sjögren’s Disease (SjD) is a systemic autoimmune disease that involves particularly salivary and lachrymal glands. As a consequence, typically, patients complain of ocular and oral dryness and salivary gland swelling. Moreover, skin, nasal and vaginal dryness are quite common as well. In addition to dryness,
- [ERN ReCONNET Plenary meetings](https://reconnet.ern-net.eu/ern-reconnet-plenary-meetings/) - ERN ReCONNET Plenary Meetings The ERN ReCONNET Plenary Meeting is the Network's principal internal governance meeting, bringing together representatives from all Healthcare Provider (HCP) Full Members, Affiliated Partners, ePAG advocates, clinical experts, and members of the ERN ReCONNET Coordination Team. The Plenary Meeting provides a forum to: review the progress of Network activities; discuss strategic
- [Disease RP](https://reconnet.ern-net.eu/disease-rp/) - ERN ReCONNET Disease Info Disease: Relapsing Polychondritis Relapsing Polychondritis (RP) What is RP? Clinical overview of the disease Relapsing polychondritis (RP) is a clinically heterogeneous, multisystemic inflammatory disease characterized by inflammation of the cartilage and proteoglycan rich structures (connective tissue) leading to cartilage damage along with joint, ENT, pulmonal and cardiovascular involvement. It may cause damage
- [Disease MCTD](https://reconnet.ern-net.eu/disease-mctd/) - ERN ReCONNET Disease Info Disease: Mixed Connective Tissue Disease Mixed Connective Tissue Disease (MCTD) Overview – What is MCTD? Clinical overview of the disease Mixed connective tissue disease (MCTD) is a rare autoimmune disease. MCTD is characterized by overlapping features of various systemic connective tissue diseases, including systemic lupus erythematosus (SLE), systemic sclerosis (SSc), dermato-/polymyositis (DM/PM),
- [Olga Drápalová](https://reconnet.ern-net.eu/epag-olga-drapalova/) - ERN ReCONNET ePAGs Olga Drápalová PaedDr. Olga Drápalová is an ERN ReCONNET ePAG representative for Idiopathic inflammatory myopathies (IIM). In particular, in our Network Olga is an ePAG Advocate for Myositis Working Group and participates in the project “Patient Myositis Journey and the Red Flag for Myositis” and is also a member of many other international
- [Disease IIMs](https://reconnet.ern-net.eu/disease-iims/) - ERN ReCONNET Disease Info Disease:Idiopathic Inflammatory Myopathies Idiopathic Inflammatory Myopathies (IIMs) Overview – What are IIMs? Clinical overview of the diseases Idiopathic inflammatory myopathies (IIMs) are a large heterogeneous group of autoimmune diseases whose common denominator is the involvement of striated skeletal muscles. IIMs are chronic, systemic diseases that may also affect the skin, joints
- [Antiphospholipid Syndrome](https://reconnet.ern-net.eu/disease-aps/) - ERN ReCONNET Disease Info Disease: Antiphospholipid Syndrome Antiphospholipid Syndrome (APS) Overview – What is APS? Antiphospholipid syndrome (APS) is a systemic autoimmune disease characterized by arterial, venous, or small vessel thromboembolic events and/or obstetric morbidity in the presence of persistent circulating antiphospholipid (aPL) antibodies detected by means of three tests: lupus anticoagulant, anticardiolipin, and beta-2
- [Antiphospholipid Syndrome](https://reconnet.ern-net.eu/disease-aps/) - ERN ReCONNET Disease Info Disease: Antiphospholipid Syndrome Antiphospholipid Syndrome (APS) Overview – What is APS? Antiphospholipid syndrome (APS) is a systemic autoimmune disease characterized by arterial, venous, or small vessel thromboembolic events and/or obstetric morbidity in the presence of persistent circulating antiphospholipid (aPL) antibodies detected by means of three tests: lupus anticoagulant, anticardiolipin, and beta-2
- [Antiphospholipid Syndrome](https://reconnet.ern-net.eu/disease-aps/) - ERN ReCONNET Disease Info Disease: Antiphospholipid Syndrome Antiphospholipid Syndrome (APS) Overview – What is APS? Antiphospholipid syndrome (APS) is a systemic autoimmune disease characterized by arterial, venous, or small vessel thromboembolic events and/or obstetric morbidity in the presence of persistent circulating antiphospholipid (aPL) antibodies detected by means of three tests: lupus anticoagulant, anticardiolipin, and beta-2
- [Supporting Partners](https://reconnet.ern-net.eu/our-network/sp/) - ERN ReCONNET Network Supporting Partners Supporting Partners ERN ReCONNET fosters collaboration with a broad range of stakeholders who contribute to the achievement of its objectives. Within this framework, Supporting Partners may be involved in the activities of the Network. Supporting Partners* include highly specialised healthcare providers, medical or scientific societies, individual experts with recognised expertise,
- [Virtual consultations - CPMS 2.0](https://reconnet.ern-net.eu/virtual-consultations-cpms-2-0/) - ERN ReCONNET The Clinical Patient Management System 2.0 Virtual consultations across borders in ERN ReCONNET Virtual consultations across borders in ERN ReCONNET The Clinical Patient Management System 2.0 Welcome to CPMS 2.0! The CPMS 2.0 is the next-generation web-based platform designed to enhance cross-border virtual consultations for rare and low-prevalence diseases discussions within
- [Disease-SSc](https://reconnet.ern-net.eu/disease-ssc/) - ERN ReCONNET Disease Info Disease: Systemic Sclerosis Systemic Sclerosis (SSc) What is SSc? Clinical overview of the disease Systemic sclerosis (SSc) is an orphan disease systemic connective tissue disease characterised by autoimmunity, fibrosis of the skin, and internal organs and vasculopathy. Unfortunately SSc has still the highest mortality among all rheumatic diseases especially in patients
- [ERN ReCONNET Coordination Team](https://reconnet.ern-net.eu/ern-reconnet-coordination-team/) - The ERN ReCONNET Coordination Team, based at the Azienda Ospedaliero Universitaria Pisana (Pisa, Italy), consists of project managers – skilled in project management, financial reporting, communication, particularly in the field of health and rare diseases – and a scientific coordinator. Prof. Marta Mosca Network Coordinator Dr. Rosaria Talarico Scientific Coordinator Dr. Diana Marinello Network Manager
- [Disease-UCTD](https://reconnet.ern-net.eu/disease-uctd/) - ERN ReCONNET Disease Info Disease: Undifferentiated Connective Tissue Disease Undifferentiated Connective Tissue Disease (UCTD) Overview – What is UCTD? Undifferentiated connective tissue disease (UCTD) is a rare autoimmune clinical entity defined by the presence of serological and clinical manifestations often seen in association with systemic autoimmune diseases (SAD) but not extensive or specific enough to
- [Members - FR - Hôpitaux Universitaires de Strasbourg - Strasbourg](https://reconnet.ern-net.eu/members-f-hôpitaux-universitaires-de-strasbourg-strasbourg/) - ERN ReCONNET Our Network Members National Reference Center for Rare Systemic Autoimmune Diseases, Rheumatology & Clinical Immunology Departments, Strasburg’s University Hospital – Hôpitaux Universitaires de Strasbourg City, Country: Strasbourg, France Website: http://www.chru-strasbourg.fr/Les-centres-de-reference/Maladies-auto-immunes-rares Healthcare Provider Representative: Prof. Thierry Martin (Clinical immunology), Prof. Laurent Arnaud (Rheumatology). Roles in the ERN: HCP full member, Idiopathic inflammatory myopathies (IIMs)
- [Members - DE - Universitätsklinikum Düsseldorf - Düsseldorf](https://reconnet.ern-net.eu/members-g-universitätsklinikum-düsseldorf-düsseldorf/) - ERN ReCONNET Our Network Members University Hospital of Duesseldorf – Universitätsklinikum Düsseldorf City, Country: Düsseldorf, Germany Website: https://www.uniklinik-duesseldorf.de/ Healthcare Provider Representative: Prof. Matthias Schneider Roles in the ERN: Strategic Board member, Registries and eHealth WG Chair, HCP full member, Disease Coordinator RP (Oliver Sander) Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Mixed Connective
- [ERN ReCONNET National Hubs - Belgium](https://reconnet.ern-net.eu/national-hubs-belgium/) - ERN ReCONNET National Hub Belgium University Hospital Ghent – UZ Gent ERN ReCONNET National Hub for Belgium Official name of the National Hub in national language: Universitair Ziekenhuis Gent City, Country: Ghent, Belgium Website: https://www.uzgent.be/ National Hub Primary contact: Prof. Vanessa Smith Additional National Hub contact: Yves Piette Since 2017 the Belgian national hub has
- [ERN ReCONNET National Hubs – France](https://reconnet.ern-net.eu/national-hubs-france/) - ERN ReCONNET National Hub France CHRU de Lille ERN ReCONNET National Hub for France Official name of the National Hub in national language: Filière nationale de santé des maladies auto-immunes et auto-inflammatoires rares– FAI²R City, Country: Lille, France Website: http://ceraino.org National Hub primary contact: Prof. Eric Hachulla Additional contact: Marie-France Pano Contact: eric.hachulla at chru-lille.fr
- [ERN ReCONNET National Hubs – Portugal](https://reconnet.ern-net.eu/national-hubs-portugal/) - ERN ReCONNET National Hub Portugal Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, EPE ERN ReCONNET National Hub for Portugal Official name of the National Hub in national language: ULS Santa Maria City, Country: Lisboa, Portugal Website: http://www.chln.pt/index.php/as-nossas-especialidades/medicina/reumatologia National Hub Primary contact: Prof. João Eurico Fonseca Additional National Hub contact: Sofia Barreira Contact: secretariado.reumatologia at ulssm.min-saude.pt
- [ERN ReCONNET National Hubs](https://reconnet.ern-net.eu/ern-reconnet-national-hubs/) - ERN ReCONNET National Hubs Strengthening the Network Across Europe The ERN ReCONNET National Hubs represent an important step toward integrating the network into national healthcare systems across Europe. What Are ERN ReCONNET National Hubs? ERN ReCONNET National Hubs represent the network at the national level and act as reference points for stakeholders involved in
- [ERN ReCONNET National Hubs - Luxembourg](https://reconnet.ern-net.eu/national-hubs-luxembourg/) - ERN ReCONNET National Hub Luxembourg Centre Hospitalier du Luxembourg ERN ReCONNET National Hub for Luxembourg Official name of the National Hub in national language: Pôle National ERN ReCONNET Luxembourg – Centre Hospitalier de Luxembourg (CHL), Nationalen ERN ReCONNET Hub Lëtzebuerg – Centre Hospitalier de Luxembourg (CHL) City, Country: Luxembourg Website: https://www.chl.lu/fr National Hub Primary contact: Martine Goergen
- [FAQ](https://reconnet.ern-net.eu/faq/) - Frequently Asked Questions on ERN ReCONNET What is ERN ReCONNET? ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases. The main aim of ERN ReCONNET is to improve the management of rare connective tissue and Musculoskeletal diseases (rCTDs) across the EU. ERN ReCONNET offers a unique opportunity to bring together
- [WG Research and Quality of care](https://reconnet.ern-net.eu/wg-research-and-quality-of-care/) - ERN ReCONNET Research and Quality of care WG Information about the Research and Quality of care WG Research and Quality of Care The main objectives of the Research and Quality of Care WG are to: Contribute to innovation and research in the field of rCTDs by encouraging research across the ERN ReCONNET Promote existing good
- [ERN ReCONNET e-Learning Accredited Course on rCTDs](https://reconnet.ern-net.eu/ern-reconnet-e-learning-accredited-course-on-rctds/) - ERN ReCONNET accredited e-Learning Course on Rare and Complex Connective Tissue Diseases – UEMS accredited Rare and complex connective tissue and musculoskeletal disorders often present with atypical clinical features, making diagnosis and management particularly challenging. To address this, ERN ReCONNET offers a comprehensive accredited online training program designed to equip physicians and healthcare
- [Supporting Patient Partners](https://reconnet.ern-net.eu/supporting-patient-partners/) - Supporting Patient Partners (SPPs) Working together with patients and patient organisations ERN ReCONNET works closely with patients, families, and patient organisations to improve care for people living with rare and complex connective tissue and musculoskeletal diseases, mainly through the involvement of ePAG Advocates, who are the formal patient representatives within ERN ReCONNET (read more
- [Disease-SLE](https://reconnet.ern-net.eu/disease-sle/) - ERN ReCONNET Disease Info Disease: Systemic Lupus Erythematosus Systemic Lupus Erythematosus (SLE) What is SLE? Clinical overview of the disease Systemic Lupus Erythematous (SLE) is the paradigm of systemic autoimmune diseases characterized by a multifaceted presentation and an unpredictable relapsing-remitting course. SLE typically affects young women between 16 and 55 years, but it can also
- [ERN ReCONNET ePAGs ADVOCATES](https://reconnet.ern-net.eu/ern-reconnet-epags-advocates/) - ERN ReCONNET European Patient Advocacy Group (ePAGs) There are about 6,000 and 8,000 rare diseases affect an estimated 30 million people in the European Union. An unfortunate feature of rare diseases and complex conditions is the fragmentation of specialist knowledge, which is often not available in the patient´s region or country. Many patients therefore might
- [Zoe Karakikla-Mitsakou](https://reconnet.ern-net.eu/zoe-karakikla-mitsakou/) - Zoe Karakikla-Mitsakou is an ERN ReCONNET ePAG representative for rare connective tissue diseases, representing Systemic Lupus Erythematosus (SLE). Zoe joined Lupus Europe in 2020 as a project manager. In 2023, she became General Secretary of Lupus Europe, supporting the organisation’s every day operations, governance, partnerships, and project management. In this role, she works across European
- [ERN ReCONNET @ Meetings](https://reconnet.ern-net.eu/ern-reconnet-meetings/) - 2026: ERN ReCONNET Endorsed Events 39th French Systemic Scleroderma Workshops: 4th – 5th February 2026, Lille (France) – Claude Huriez Hospital, Lille University Hospital. The programme is available here: link. ComplementRarity, 2nd Edition – Evolution in Therapy: 6th – 7th February 2026, Rome (Italy) – Fondazione PTV Policlinico Tor Vergata. The programme is available here:
- [Events & Media Dissemination materials](https://reconnet.ern-net.eu/event-and-media-dissemination-materials/) - ERN ReCONNET Events & Media Dissemination materials about ERN ReCONNET and rCTDs. Dissemination materials developed by ERN ReCONNET and European Commission ERN ReCONNET Leaflet: click here to download ERN ReCONNET Clinical Patient Management System Leaflet: click here to download ERN ReCONNET shares patient stories
- [Disease Info](https://reconnet.ern-net.eu/disease-info/) - ERN ReCONNET Disease Info ERN ReCONNET Rare Connective Tissue and Musculo-Skeletal Diseases (rCTDs) The rCTDs comprise a large number of diseases and syndromes, with a tremendous impact on patient well-being. This network groups rCTDs into three main thematic groups: Rare autoimmune, complex autoimmune, and rare hereditary connective tissue and musculoskeletal diseases. In particular, the ERN ReCONNET currently covers the
- [Our Network](https://reconnet.ern-net.eu/ournetwork/) - Our Network – ERN ReCONNET Our Network – Overview of ERN ReCONNET ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases. The main aim of ERN ReCONNET is to improve the management of rare connective tissue and musculo-skeletal diseases (rCTDs) across the EU. The main objectives of ERN ReCONNET are: Realisation of the potential of European cooperation
- [Patients Organisations SjD](https://reconnet.ern-net.eu/patients-organisations-ss/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: SJÖGREN’S DISEASE SjD Patients’ Organisations THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON SjD CAN BE SEEN HERE. EU Austria Belgium Croatia Finland France Germany Italy Netherlands Norway Poland Portugal Romania Spain Sweden Switzerland United Kingdom
- [Ana Vieira](https://reconnet.ern-net.eu/epag-vieira/) - ERN ReCONNET ePAGs Ana Vieira Ana Vieira is an ERN ReCONNET ePAG representative for Sjögren’s Disease (SjD). Ana is an international patient advocate and a member and volunteer of the Liga Portuguesa Contra as Doenças Reumáticas (Portuguese League Against Rheumatic Diseases), where she acts as liaison officer for the International Sjögren’s Network (ISN) and EURORDIS. She
- [Bouillot](https://reconnet.ern-net.eu/epag-bouillot/) - ERN ReCONNET ePAGs Coralie Bouillot Coralie Bouillot is an ERN ReCONNET ePAG representative for Sjögren’s disease (SjD). In 2023, Coralie won the ERN ReCONNET ePAG bursary to join the EULAR Congress that was held in Milan (Italy); after the event, she kindly recorded for the Network two short videos on her experience in English and
- [ERN ReCONNET Exchange Programme](https://reconnet.ern-net.eu/exchange-programme/) - ERN ReCONNET Activities ERN ReCONNET Exchange Programme The ERN ReCONNET Exchange Programme: sharing knowledge across borders The ERN ReCONNET Exchange Program offers healthcare professionals and patient advocates a unique opportunity to connect, learn, and collaborate across borders. Supported by the European Commission, the program enables participants to visit healthcare providers in other European
- [WG Education and Training](https://reconnet.ern-net.eu/wg-education-and-training/) - ERN ReCONNET Education and Training WG Information about the Education and Training WG Education and Training The main objectives of the Education and Training WG are: Promotion and development of knowledge sharing and of training and educational activities for professionals, patients, caregivers and family members, including mobility programmes Assessment of the educational and training needs
- [Patsalias Alexander](https://reconnet.ern-net.eu/epag-patsalias-alexander/) - ERN ReCONNET ePAGs – Alexander Patsalias Alexander Patsalias Alexander Patsalias is an ERN ReCONNET ePAG representative for IgG4-related disease (IgG4). Within ERN ReCONNET, Alexander Patsalias actively contributes to patient engagement efforts, including co-creating patient-centered tools, supporting awareness campaigns, and participating in working groups focused on improving diagnosis, care, and quality of life for patients
- [Jamy Scheerhoorn-Pullen](https://reconnet.ern-net.eu/epag-jamy-scheerhoorn-pullen/) - ERN ReCONNET ePAGs – Jamy Scheerhoorn-Pullen Jamy Scheerhoorn-Pullen Jamy Scheerhoorn-Pullen is an ERN ReCONNET ePAG representative for Antiphospholipid Syndrome (APS). In this capacity, Jamy works diligently to ensure that the perspectives and needs of patients are central to discussions and initiatives aimed at improving care for individuals with rCTDs. She is actively involved with
- [CPMS National Hubs Brochures](https://reconnet.ern-net.eu/cpms-nh-brochures/) - ERN ReCONNET CPMS Clinical Patient Management System National Hubs Brochures Here you can find the informative brochures on CPMS National Hubs translated in the main european languages. English National Hub Italiano Hub nazionale Românește Centrul Național Deutsch National Hub Nederlands Nationale Hub België Nationale Hub Français Hub National Português Centro Nacional Belgique Hub National
- [Clinical Patient Management System](https://reconnet.ern-net.eu/our-network-ern-it-services/) - ERN ReCONNET Activities Clinical Patient Management System Clinical Patient Management System The Clinical Patient Management System (CPMS) is a secure web-based application to support ERNs in the diagnosis and treatment of rare or low prevalence complex disease or conditions across national borders. In order to login the CPMS you need to request authorisation to the
- [JARDIN Joint Action](https://reconnet.ern-net.eu/jardin-joint-action/) - JARDIN is a Joint Action (JA) created to achieve the integration of European Reference Networks (ERNs) into National Healthcare Systems. JARDIN’s mission and vision are based on “Integration, equity and sustainability”. JARDIN was born with the aim to grow as a bridge between ERNs and national healthcare systems. The vision is to put people living with
- [Next ERN ReCONNET webinar](https://reconnet.ern-net.eu/next-ern-reconnet-webinar/) - Register now for the next ERN RECONNET webinar: “Diagnosis and management of peripheral neurological manifestations in Sjögren’s disease” It will take place on the 19th of March 2025, at 16 CET Register now at this link: bit.ly/3FoIanK The speakers for this webinar will be Dr. Alessia Alunno, moderated by Mrs Coralie Peter Bouillot and Prof.
- [Events & Media News](https://reconnet.ern-net.eu/event-and-media-news/) - ERN ReCONNET Events & Media Past and future meetings, conferences, congresses. News News from relevant stakeholders on health and rare diseases. Take a look at it and start to engage with the initiatives enlisted here. If you have a news that you would like us to share, please send us an email to: ern.reconnet(at)ao-pisa.toscana.it 📬
- [Events & Media News](https://reconnet.ern-net.eu/event-and-media-news/) - ERN ReCONNET Events & Media Past and future meetings, conferences, congresses. News News from relevant stakeholders on health and rare diseases. Take a look at it and start to engage with the initiatives enlisted here. If you have a news that you would like us to share, please send us an email to: ern.reconnet(at)ao-pisa.toscana.it 📬
- [event-and-media-newsletter](https://reconnet.ern-net.eu/event-and-media-newsletter/) - ERN ReCONNET Events & Media Newsletter issues Newsletter & Social Media To Subscribe to our ERN ReCONNET NEWSLETTER send and email to: ern.reconnet(at)gmail.com Subject: “ERN ReCONNET Newsletter Registration” Look forward to it! FOLLOW ERN ReCONNET on SOCIAL MEDIA and ENGAGE with US, hashtag #ERNReCONNET: LinkedIn – ​X – Facebook – Instagram – YouTube 📬 Our July
- [Disease_SSc](https://reconnet.ern-net.eu/disease_ssc/) - ERN ReCONNET Disease Info Disease: Systemic Sclerosis Systemic Sclerosis (SSc) Systemic sclerosis (SSc), or scleroderma, is a chronic connective tissue disease, characterized by tissue inflammation, fibrosis and vascular obliteration in the skin and internal organs, particularly lungs, heart, and digestive tract. There are two main subsets of SSc: diffuse cutaneous SSc (dcSSc) and limited cutaneous
- [2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases](https://reconnet.ern-net.eu/2nd-ern-reconnet-international-congress-on-rare-and-low-prevalence-connective-tissue-diseases/) - The Congress Committee and the ERN ReCONNET is glad to invite you to the 2nd ERN ReCONNET International Congress on rare and low-prevalence connective tissue diseases that will take place in Prague, Czech Republic, on April 9-11, 2025. Knowledge, awareness, and a patient-centered approach have been cornerstones of the activity of ERN ReCONNET in its first five years
- [Luciu Ramona](https://reconnet.ern-net.eu/ern-reconnet-epags-advocates/epag-ramona-luciu/) - Ramona Luciu Ramona Luciu is an ERN ReCONNET ePAG representative for Undifferentiated Connective Tissue Disease (UCTD) and a member of ART (Association of Patients with Inflammatory Rheumatic Diseases in Transilvania). She is from Romania, with a degree in Ecology and a background in Logistics. She has been diagnosed with UCTD in 2021. She is a
- [Registry](https://reconnet.ern-net.eu/our-activities-registry/) - ERN ReCONNET Activities Registry TogethERN ReCONNET Patient Registry ERN ReCONNET Poster (click to open and download it) TogethERN ReCONNET, the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (rCTDs), aims at integrating all existing and newly developed registries on rCTDs across Europe and providing a sufficient number of
- [WG Patients' Partnership](https://reconnet.ern-net.eu/wg-patients-partnership/) - ERN ReCONNET Patients’ Partnership WG Information about the Patients’ Partnership WG Patients’ Partnership The main objectives of the Patients’ Partnership WG are the: Involvement of rCTDs patients and patients’ representatives in the ERN ReCONNET Empowerment of rCTDs patients and patients’ representatives In order to reach these objectives, the Patients’ Partnership WG supports and manages, together
- [epag Silke Schlüter](https://reconnet.ern-net.eu/epag-silke-schluter/) - ERN ReCONNET ePAGs Silke Schlüter Mrs. Silke Schlüter is an ERN ReCONNET ePAG representative for Idiopathic Inflammatory Myopathies (IIMs). Silke takes part in regularly meetings for the ePAG’s and for the IIM disease group members. She also joins meetings with the ERN ReCONNET coordination team. Silke Schlüter is involved in creating content for webinars, congress programs, aspects
- [Members - FR - CHRU de Lille - Lille](https://reconnet.ern-net.eu/members-f-chru-de-lille-lille/) - ERN ReCONNET Our Network Members CHRU de Lille – Department of Internal Medicine, Huriez Hospital. University of Lille (France) City, Country: Lille, France Website: http://ceraino.org Healthcare Provider Representative: Prof. Eric Hachulla Role in the ERN: Steering Committee member, HCP full member, Education and Training WG Chair, leader ERN Exchange Program Area of expertise in the ERN:
- [Disease-EDS](https://reconnet.ern-net.eu/disease-eds/) - ERN ReCONNET Disease Info Disease: Ehlers-Danlos Syndromes Ehlers-Danlos Syndromes (EDS) The term Ehlers-Danlos syndromes (EDS) include a clinically and genetically heterogeneous group of hereditary connective tissue disorders characterized by remarkable joint hypermobility, abnormal skin texture and tissue fragility. The advent of next generation sequencing into genetic research and diagnostics expanded the knowledge on the molecular
- [Disease-EDS](https://reconnet.ern-net.eu/disease-eds/) - ERN ReCONNET Disease Info Disease: Ehlers-Danlos Syndromes Ehlers-Danlos Syndromes (EDS) The term Ehlers-Danlos syndromes (EDS) include a clinically and genetically heterogeneous group of hereditary connective tissue disorders characterized by remarkable joint hypermobility, abnormal skin texture and tissue fragility. The advent of next generation sequencing into genetic research and diagnostics expanded the knowledge on the molecular
- [Disease-EDS](https://reconnet.ern-net.eu/disease-eds/) - ERN ReCONNET Disease Info Disease: Ehlers-Danlos Syndromes Ehlers-Danlos Syndromes (EDS) The term Ehlers-Danlos syndromes (EDS) include a clinically and genetically heterogeneous group of hereditary connective tissue disorders characterized by remarkable joint hypermobility, abnormal skin texture and tissue fragility. The advent of next generation sequencing into genetic research and diagnostics expanded the knowledge on the molecular
- [Members - IT - IRCCS AOU San Martino - Genoa](https://reconnet.ern-net.eu/members-it-irccs-aou-san-martino-genoa/) - ERN ReCONNET Our Network IRCSS Polyclinic Hospital San Martino – University of Genova City, Country: Genova, Italy. Website: www.ospedalesanmartino.it/ Healthcare Provider Representative: Prof. Maurizio Cutolo Roles in the ERN: Deputy Coordinating Centre, Steering Committee member, HCP full member, Education and Training Working Group co-Chair – Prof. Maurizio Cutolo, Ehlers-Danlos syndromes (EDS) Disease Group Coordination – Prof.
- [Members - IT - Pini](https://reconnet.ern-net.eu/members-it-pini/) - ERN ReCONNET Our Network Members Gaetano Pini Traumatology Orthopedic Specialized Center ASST Centro Specialistico Ortopedico Traumatologico Gaetano Pini (Presidio Pini) City, Country: Milano, Italy Website: https://www.asst-pini-cto.it/ Healthcare Provider Representative: Prof. Francesca Ingegnoli Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue
- [Members - BE - University Hospital Ghent 1 - Ghent](https://reconnet.ern-net.eu/members-b-university-hospital-ghent-1-ghent/) - ERN ReCONNET Our Network Members University Hospital Ghent – UZ Gent City, Country: Ghent, Belgium Website: https://www.uzgent.be/ Healthcare Provider Representative: Prof. Vanessa Smith Roles in the ERN: Steering Committee member, Systemic Sclerosis (SSc) Disease Coordination, ERN ReCONNET Young WG Chair, HCP full member Areas of expertise in the ERN: Ehlers-Danlos syndromes (EDS), Idiopathic inflammatory myopathies (IIMs),
- [ePAG CAMELIA BUCSA](https://reconnet.ern-net.eu/epag-camelia-bucsa/) - ERN ReCONNET ePAGs Camelia Bucsa Dr. Camelia Bucsa is an ERN ReCONNET ePAG representative for Relapsing Polychondritis (RP). In particular, Dr. Bucsa is a member of the ERN ReCONNET Working Groups: Registries and eHealth and Patient’s Partnership. Dr. Bucsa is a pharmacist by education and training and works as a researcher. She is part
- [epag Magdalena Ciupera](https://reconnet.ern-net.eu/epag-magdalena-ciupera/) - ERN ReCONNET ePAGs Magdalena Ciupera Magdalena Ciupera is an ERN ReCONNET ePAG representative for Mixed Connective Tissue Disease (MCTD). As a patients advocate she became a member of the ERN ReCONNET community for patients in Poland to benefit from the collective expertise of multidisciplinary teams as well as provide information about available resources, support services, and community
- [Members - IT - IRCCS Casa sollievo](https://reconnet.ern-net.eu/members-it-irccs-casa-sollievo/) - ERN ReCONNET Our Network IRCCS Casa Sollievo della Sofferenza Foundation Fondazione IRCCS Casa Sollievo della Sofferenza City, Country: San Giovanni Rotondo – Foggia, Italy Website: https://www.operapadrepio.it/it/ Healthcare Provider Representative: Dr. Marco Castori Roles in the ERN: HCP full member, Ehlers-Danlos Syndrome (EDS) Disease Coordination, Research and Quality of Care Working Group Member. Area of
- [Members - FR - Bicêtre](https://reconnet.ern-net.eu/members-fr-bicetre/) - ERN ReCONNET Our Network Public Hospital Bicetre of Paris Assistance Publique-Hôpitaux de Paris, Hôpital Bicêtre City, Country: Paris, France Website: https://www.aphp.fr/service/service-04-010 Healthcare Provider Representative: Prof. Xavier Mariette Roles in the ERN ReCONNET: HCP full member, Sjögren’s Syndrome (SS) Disease Coordination Area of expertise in the ERN: Sjögren’s Syndrome (SS) Contact: https://www.aphp.fr/offre-de-soin/medecin/546683/010/04 Prof. Xavier Mariette Dr.
- [Members - BE - University Hospital Ghent 2](https://reconnet.ern-net.eu/members-be-university-hospital-ghent-2/) - ERN ReCONNET Our Network University Hospital Ghent – UZ Gent City, Country: Ghent, Belgium Website: https://www.uzgent.be/ Healthcare Provider Representative: Prof. Fransiska Malfait Roles in the ERN: HCP full member Areas of expertise in the ERN:Ehlers-Danlos Syndromes (EDS), Idiopathic inflammatory Myopathies (IIM), Systemic Sclerosis (SSc). Contact: Fransiska Malfait Prof. Fransiska Malfait
- [Lisa Matthews](https://reconnet.ern-net.eu/epag-matthews/) - ERN ReCONNET ePAGs Lisa Matthews Lisa Matthews is an ERN ReCONNET ePAG representative for Relapsing Polychondritis (RP). She is based in the UK and represents Relapsing Polychondritis Patients in Europe. After over 20+ years in Human Resources, Lisa’s health deteriorated and after seven years of investigations, she was eventually diagnosed with Relapsing Polychondritis. This meant
- [Charissa Frank](https://reconnet.ern-net.eu/epag-frank/) - ERN ReCONNET ePAGs Charissa Frank Charissa Frank is an ERN ReCONNET ePAG representative for Ehlers-Danlos Syndromes (EDS). She is also a member of the Steering Committee of bindweefsel.be, Co-Chair of VASCERN ePAG MSA-WG, member of EURORDIS ePAGs Steering Committee. She is also in various committees: EJP-RD, EMA, EDS Society. ERN RECONNET WEBINARS ON EDS ARE FREELY AVAILABLE. ERN RECONNET WEBINARS WITH OUR
- [Ilaria Galetti](https://reconnet.ern-net.eu/epag-galetti/) - ERN ReCONNET ePAGs Ilaria Galetti Ilaria Galetti is an ERN ReCONNET ePAG representative for Systemic Sclerosis (SSc). Ilaria is also co-Chair of the Research and Quality of care WG together with Dr. Rosaria Talarico from the AOU Pisana – Azienda Ospedaliero Universitaria Pisana (Coordinating Center) (Italy). Ilaria Galetti has been coping with Systemic Sclerosis since
- [Sue Farrington](https://reconnet.ern-net.eu/epag-farrington/) - ERN ReCONNET ePAGs Sue Farrington Sue Farrington is an ERN ReCONNET ePAG representative for Systemic Sclerosis (SSc). She is currently President of FESCA, the Federation of European Scleroderma Associations, and Chief Executive of SRUK. Both organisations work with the community to advocate for improvements in the healthcare system and to accelerate the benefits of research.
- [Eva Collado-González](https://reconnet.ern-net.eu/epag-collado/) - ERN ReCONNET ePAGs Eva Collado-González Eva Collado-González is an ERN ReCONNET ePAG representative for Ehlers-Danlos Syndromes (EDS). She is a member of the Spanish ANSEDH · Asociación Nacional Síndrome de Ehlers-Danlos e Hiperlaxitud. ERN RECONNET WEBINARS ON EDS ARE FREELY AVAILABLE. ERN RECONNET WEBINARS WITH OUR EPAG EVA Everything you always wanted to know about Ehlers-Danlos Syndrome
- [Alain Cornet](https://reconnet.ern-net.eu/epag-cornet/) - ERN ReCONNET ePAGs Alain Cornet Alain Cornet is an ERN ReCONNET ePAG representative for Systemic Lupus Erythematosus (SLE). He is the General Secretary of Lupus Europe. After 32 years of Professional experience as Director in a large multinational, he transitioned to fully dedicate his time to charitable causes in 2018. In may 2020 Alain became
- [Jeanette Andersen](https://reconnet.ern-net.eu/epag-andersen/) - ERN ReCONNET ePAGs Jeanette Andersen Jeanette Andersen is an ERN ReCONNET ePAG representative for Systemic Lupus Erythematosus (SLE). She is from Denmark and has a Master’s degree in German and Philosophy from the University of Copenhagen. In 2011 she was diagnosed with SLE, which (in combination with a lot of comorbidities) forced her to go into
- [Silvia Aguilera](https://reconnet.ern-net.eu/epag-aguilera/) - ERN ReCONNET ePAGs Silvia Aguilera Silvia Aguilera is an ERN ReCONNET ePAG representative for Antiphospholipid Syndrome (APS), she is also co-Chair of the ERN ReCONNET Young WG together with Prof. Vanessa Smith from University Hospital Ghent – UZ Gent (Belgium), since 2021, Silvia joined Ilaria Galetti as co-lead of the ERN ReCONNET ePAG group. With a
- [ePAG Vera Guimarães](https://reconnet.ern-net.eu/epag-guimaraes/) - ERN ReCONNET ePAGs Vera Guimaraes Vera Guimaraes is an ERN ReCONNET ePAG representative for Mixed Connective Tissue Disease (MCTD). She lives in Vila Franca de Xira, near Lisbon, capital of Portugal. Vera is a clinical psychologist at Vila Franca de Xira hospital in a oncology unit and member of a palliative care team. Vera has been living
- [Our Network Members](https://reconnet.ern-net.eu/our-network-members/) - ERN ReCONNET Network ERN ReCONNET Members ERN ReCONNET currently involves 63 Healthcare Providers, 54 Full Members and 9 Affiliated Partners (APs) over 23 European countries: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Slovenia, Spain, Sweden, and The Netherlands. Here is a list of
- [Our Network Members](https://reconnet.ern-net.eu/our-network-members/) - ERN ReCONNET Network ERN ReCONNET Members ERN ReCONNET currently involves 63 Healthcare Providers, 54 Full Members and 9 Affiliated Partners (APs) over 23 European countries: Austria, Belgium, Croatia, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Italy, Latvia, Lithuania, Luxembourg, Malta, Poland, Portugal, Romania, Slovenia, Spain, Sweden, and The Netherlands. Here is a list of
- [Members - SV - Karolinska Universitetssjukhuset](https://reconnet.ern-net.eu/members-sv-karolinska/) - ERN ReCONNET Our Network Karolinska Institute Karolinska Universitetssjukhuset City, Country: Stockholm, Sweden Website: https://www.karolinska.se/ Healthcare Provider Representative: Prof. Ingrid Lundberg Roles in the ERN: HCP full member, Idiopathic Inflammatory Myopathies (IIM) Disease Coordination Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic inflammatory Myopathies (IIM) (pediatric and adult), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus
- [Members - SP - 12 de Octubre](https://reconnet.ern-net.eu/members-sp-12-de-octubre/) - ERN ReCONNET Our Network University Hospital 12 de Octubre Hospital Universitario 12 de Octubre City, Country: Madrid, Spain Website: https://www.comunidad.madrid/hospital/12octubre/ Healthcare Provider Representative: Prof. Patricia Carreira Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), Undifferentiated
- [Members - SP - Vall d'Hebron](https://reconnet.ern-net.eu/members-sp-vall-dhebron/) - ERN ReCONNET Our Network Vall d’Hebron University Hospital Hospital Universitari Vall d’Hebron City, Country: Barcelona, Spain Website: www.vallhebron.com Healthcare Provider Representative: Prof. Sara Marsal Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome, IgG4-related disease, Idiopathic Inflammatory Myopathies, Systemic Lupus Erythematosus, Sjögren’s Syndrome, Systemic Sclerosis. Antiphospholipid Syndrome
- [Members - PT - Porto](https://reconnet.ern-net.eu/members-pt-porto/) - ERN ReCONNET Our Network University Hospital Center of Porto, EPE Centro Hospitalar Universitario do Porto, EPE City, Country: Porto, Portugal Website: https://www.chporto.pt/ Healthcare Provider Representative: Prof. Carlos Vasconcelos Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Sjögren’s Syndrome (SS), Systemic
- [Members - PO - Centro Hospitalar de Lisboa Central](https://reconnet.ern-net.eu/members-po-centro-hospitalar-de-lisboa-central/) - ERN ReCONNET Our Network Hospital Center of Central Lisbon, EPE Centro Hospitalar de Lisboa Central, EPE City, Country: Lisboa, Portugal Website: http://www.chlc.min-saude.pt/ Healthcare Provider Representative: Dr. Vera Bernardino Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Sjögren’s Syndrome (SS), Systemic
- [Members - NL - Nijmegen](https://reconnet.ern-net.eu/members-nl-nijmegen/) - ERN ReCONNET Our Network Members Radboud University Medical Centre Nijmegen Rabdoud Universitair Medisch Centrum City, Country: Nijmegen, The Netherlands Website: https://www.radboudumc.nl/ Healthcare Provider Representative: Dr. Madelon Vonk Role in the ERN: HCP full member Area of expertise in the ERN: Systemic Sclerosis (SSc). Contact: Over de afdeling Reumatologie
- [Members - NL - Leiden University Medical Center - Leiden](https://reconnet.ern-net.eu/members-nl-leiden-university-medical-center-leiden/) - ERN ReCONNET Our Network Leiden University Medical Center Leiden University Medical Center Leids Universitair Medisch Centrum City, Country: Leiden, The Netherlands Website: https://www.lumc.nl Healthcare Provider Representative: J.K.de Vries-Bouwstra Role in the ERN: Member of Systemic Sclerosis (SSc) Disease group Area of expertise in the ERN: Systemic Sclerosis (SSc). Contact: reumatologie.academischezorg at lumc.nl
- [Members - NL - Groningen](https://reconnet.ern-net.eu/members-nl-groningen/) - ERN ReCONNET Our Network Members University Medical Centre Groningen Universitair Medisch Centrum Groningen City, Country: Groningen, The Netherlands Website: https://www.umcg.nl/ Healthcare Provider Representative: Prof. Hendrika Bootsma Role in the ERN: HCP full member Area of expertise in the ERN: Sjögren’s Syndrome (SS). Contact: Verwijsinformatie Reumatologie en Klinische Immunologie
- [Members - NL - Amsterdam](https://reconnet.ern-net.eu/members-nl-amsterdam/) - ERN ReCONNET Our Network Members VU University Medical Center Amsterdam Amsterdam Universitair Medische Centra City, Country: Amsterdam, The Netherlands Website: https://www.vumc.nl/ Healthcare Provider Representative: Prof. Alexandre Voskuyl Role in the ERN: HCP full member Areas of expertise in the ERN: Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), Undifferentiated Connective Tissue Disease (UCTD). Contact: reumatologie at vumc.nl
- [Patients Organisations SSC](https://reconnet.ern-net.eu/patients-organisations-ssc/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: SYSTEMIC SCLEROSIS SSc Patients’ Organisations THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON SSc CAN BE SEEN HERE. EU Belgium: CIB-Liga vzw, Association des Patients Sclérodermiques de Belgique (APSB) Croatia Denmark Finland France Germany Hungary Italy: GILS ODV, Associazione Italiana Lotta alla Sclerodermia ONLUS, ASSOCIAZIONE PER LO STUDIO DELLA
- [Members - IT - AOU Pisana - Pisa](https://reconnet.ern-net.eu/members-it-aou-pisana-pisa/) - Prof. Marta Mosca AOUP Azienda Ospedaliero Universitaria Pisana Pisa European Reference Network on Rare and Complex Connective Tissue Diseases (ERN ReCONNET) Coordinator, Steering Committee member, HCP full member
- [Members - IT AOUI Verona](https://reconnet.ern-net.eu/members-it-aoui-verona/) - ERN ReCONNET Our Network Members Integrated University Hospital of Verona Azienda Ospedaliera Universitaria Integrata di Verona City, Country: Verona, Italy Website: https://www.aovr.veneto.it/ Healthcare Provider Representative: Prof. Giovanni Orsolini Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Sjögren’s
- [Members - IT - Azienda Sanitaria Universitaria Friuli Centrale](https://reconnet.ern-net.eu/members-it-friuli/) - ERN ReCONNET Our Network Members University Hospital of Central Friuli Azienda Sanitaria Universitaria Friuli Centrale City, Country: Udine, Italy Website: https://asufc.sanita.fvg.it/it/ Healthcare Provider Representative: Prof. Salvatore De Vita Role in the ERN: HCP full member Area of expertise in the ERN: Sjögren’s syndrome (SS). Contacts: salvatore.devita at asufc.sanita.fvg.it segreteria.reumatologia at asufc.sanita.fvg.it How to access the
- [Members - IT - A.S.L. Torino](https://reconnet.ern-net.eu/members-it-a-s-l-torino/) - ERN ReCONNET Our Network Members San Giovanni Bosco Hospital A.S.L. Torino – Hub San Giovanni Bosco City, Country: Torino, Italy Website: https://www.aslcittaditorino.it/ Healthcare Provider Representative: Prof. Dario Roccatello Healthcare Provider sub-Representative and APS Disease Coordinator: Prof. Savino Sciascia Roles in the ERN: HCP full member and Antiphospholipid Syndrome (APS) Disease Coordination Areas of expertise in
- [Members - IT - AOU San Giovanni di Dio e Ruggi d’Aragona](https://reconnet.ern-net.eu/members-it-aou-san-giovanni/) - ERN ReCONNET Our Network Members University Hospital San Giovanni di Dio and Ruggi d’Aragona Azienda Ospedaliera Universitaria (AOU) San Giovanni di Dio e Ruggi d’Aragona City, Country: Salerno, Italy Website: www.sangiovannieruggi.it Healthcare Provider Representative: Prof. Massimo Triggiani Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Mixed Connective
- [Members - IT - Umberto I](https://reconnet.ern-net.eu/members-it-umberto-i/) - ERN ReCONNET Our Network AOU Policlinico Umberto I di Roma University Hospital Umberto I Azienda Ospedaliero Universitaria (AOU) Umberto I City, Country: Rome, Italy Website: https://www.policlinicoumberto1.it Healthcare Provider Representative: Prof. Valeria Riccieri Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue
- [Members - IT - Forlanini Roma](https://reconnet.ern-net.eu/members-it-forlanini-roma/) - ERN ReCONNET Our Network Members Hospital San Camillo Forlanini Azienda Ospedaliera (AO) San Camillo Forlanini City, Country: Rome, Italy Website: http://www.scamilloforlanini.rm.it/ Healthcare Provider Representative: Dr. Alessandro Ferraris Role in the ERN: HCP full member Area of expertise in the ERN: Ehlers-Danlos Syndromes (EDS). Contact: Laboratorio Genetica Medica
- [Members - IT - Pavia](https://reconnet.ern-net.eu/members-it-pavia/) - ERN ReCONNET Our Network Members IRCCS Polyclinic San Matteo Foundation Fondazione IRCCS Ospedale San Matteo City, Country: Pavia, Italy Website: http://www.sanmatteo.org/ Healthcare Provider Representative: Prof. Carlomaurizio Montecucco Role in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), Undifferentiated Connective Tissue Disease (UCTD).
- [Members - IT - AOU Modena](https://reconnet.ern-net.eu/members-it-aou-modena/) - ERN ReCONNET Our Network Members Hospital University of Modena Azienda Ospedaliero Universitaria (AOU) di Modena City, Country: Modena, Italy Website: https://www.aou.mo.it/home.html Healthcare Provider Representative: Prof. Dilia Giuggioli Role in the ERN: HCP full member Area of expertise in the ERN: Systemic Sclerosis (SSc). Contacts: dilia.giuggioli at unimore.it pdtassc at aou.mo.it Phone: +39 059 4225777 How to
- [Members - IT - Polyclinic Milan](https://reconnet.ern-net.eu/members-it-polyclinic-milan/) - ERN ReCONNET Our Network Members Foundation IRCCS CA’ Granda Ospedale Maggiore Polyclinic of Milan Fondazione IRCSS Ca’ Granda Ospedale Maggiore Policlinico di Milano City, Country: Milan, Italy Website: https://www.policlinico.mi.it/reparti/33/medicina-immunologia-e-allergologia Healthcare Provider Representative: Prof. Lorenzo Beretta Role in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases
- [Members - IT - Civil Hospital - Brescia](https://reconnet.ern-net.eu/i-civil-hospital-brescia-brescia/) - ERN ReCONNET Our Network Members Civil University Hospital of Brescia ASST Spedali Civili e Universitario di Brescia City, Country: Brescia, Italy Website: http://www.asst-spedalicivili.it/servizi/notizie/notizie_homepage.aspx Healthcare Provider Representative: Prof. Angela Tincani Role in the ERN: Steering Committee member, HCP full member Area of expertise in the ERN: Antiphospholipid syndrome, Idiopathic inflammatory Myopathies, Mixed connective tissue diseases, Sjögren’s
- [Members - IT - AOU Ospedali Riuniti](https://reconnet.ern-net.eu/members-it-aou-ospedali-riuniti/) - ERN ReCONNET Our Network Members Marche University Hospital Azienda Ospedaliero Universitaria delle Marche City, Country: Ancona, Italy Website: https://www.ospedaliriuniti.marche.it/portale/ Healthcare Provider Representative: Prof. Gianluca Moroncini Role in the ERN: HCP full member Area of expertise in the ERN: Systemic Sclerosis (SSc). Contact: clinicamedica at ospedaliriuniti.marche.it How to access centre: Appointment by email contact.
- [Members - DE - Kerckhoff Klinik - Bad Neuheim](https://reconnet.ern-net.eu/members-g-kerckhoff-klinik-bad-neuheim/) - ERN ReCONNET Our Network Members Kerckhoff Clinic Kerckhoff-Klinik City, Country: Bad Nauheim, Germany Website: https://www.kerckhoff-klinik.de/rheuma Healthcare Provider Representative: Prof. Ulf Müller-Ladner Role in the ERN: Steering Committee member, HCP full member. Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Systemic Sclerosis (SSc). Contact: rheumatologie at kerckhoff-klinik.de
- [Members - G - Erlangen](https://reconnet.ern-net.eu/members-g-erlangen/) - ERN ReCONNET Our Network Members University Hospital of Erlangen Universitätsklinikum Erlangen City, Country: Erlangen, Germany Website: https://www.uk-erlangen.de/medizin-3/ Healthcare Provider Representative: Prof. Georg Schett Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Relapsing polychondritis (RP), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), Systemic
- [Members - FR - APHP Hôpital Raymond Poincaré](https://reconnet.ern-net.eu/members-fr-poincare/) - ERN ReCONNET Our Network Members Public Hospital Raymond Poincaré – Assistance Publique, HP Hôpital Raymond Poincaré City, Country: Paris, France Website: https://www.aphp.fr/service/service-51-068 Healthcare Provider Representative: Karelle Benistan Role in the ERN: HCP full member Area of expertise in the ERN: Ehlers-Danlos Syndromes (EDS). Contacts: karelle.benistan at aphp.fr Secretariat: christine.vassalle at aphp.fr 01 47 10 44
- [Members - FR - Hôpital Pitié-Salpêtrière, Assistance publique - Hôpitaux de Paris](https://reconnet.ern-net.eu/members-hopital-pitie-salpetriere-assistance-publique-hopitaux-de-paris/) - ERN ReCONNET Our Network Members Pitié-Salepétrière Public Hospital – APHP, Hôpital Pitié-Salepétrière, Assistance Publique City, Country: Paris, France Website: http://pitiesalpetriere.aphp.fr/lupus/ Healthcare Provider Representative: Prof. Zahir Amoura Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Relapsing polychondritis (RP), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus
- [Members - FR - CHU de Bordeaux](https://reconnet.ern-net.eu/members-fr-chu-de-bordeaux/) - ERN ReCONNET Our Network Members University Hospital Center of Bordeaux – Centre Hospitalier Universitaire de Bordeaux City, Country: Bordeaux, France Website: https://www.chu-bordeaux.fr Healthcare Provider Representative: Prof. Christophe Richez Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc) Contact: reference.autoimmunite at chu-bordeaux.fr
- [Members - FI - Helsinki](https://reconnet.ern-net.eu/members-fi-helsinki/) - ERN ReCONNET Our Network Members Helsinki University Hospital, Hospital District of Helsinki and Uusimaa – HUS Helsingin Yliopistollinen Sairaala City, Country: Helsinki, Finland Website: https://www2.helsinki.fi/en/researchgroups/helsinki-rheumatic-diseases-inflammation-group Healthcare Provider Representative: Prof. Kari Eklund Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS) (paediatric), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue
- [Members - BE - UZ Leuven](https://reconnet.ern-net.eu/members-be-leuven/) - ERN ReCONNET Our Network Members UZ Leuven City, Country: Leuven, Belgium Website: https://www.uzleuven.be/en Healthcare Provider Representative: Prof. Ellen De Langhe Role in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc). Contact: reumatologie at uzleuven.be How to access centre: Appointment for consultation (you
- [Members - BE - Saint-Luc](https://reconnet.ern-net.eu/members-be-saint-luc/) - ERN ReCONNET Our Network Members University Hospitals Saint Luc – Cliniques Universitaires Saint-Luc City, Country: Bruxelles, Belgium Website: https://www.saintluc.be/ Healthcare Provider Representative: Prof. Frédéric Houssiau Role in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic inflammatory Myopathies (IIM), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc). Contact: Service de Rhumatologie
- [Patients Organisations Rheumatology](https://reconnet.ern-net.eu/patients-organisations-rheumatology/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Rheumatology Patients’ Organisations Austria Belgium: CLAIR and ReumaNet vzw Bulgaria Croatia Cyprus Czech Republic Denmark Estonia Finland France Germany Greece Hungary Italy: Associazione Nazionale Malati Reumatici and Associazione Nazionale Persone con Malattie Reumatologiche e Rare Latvia Lithuania Netherlands Norway Poland Portugal Romania Slovakia Slovenia Spain Sweden United Kingdom
- [Patients Organisations SLE](https://reconnet.ern-net.eu/patients-organisations-sle/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: SYSTEMIC LUPUS ERYTHEMATOSUS SLE Patients’ Organisations THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON SLE CAN BE SEEN HERE. EU Belgium: ASBL Lupus Erythematosus Association (French), Liga voor Chronische Inflammatoire (Flemish) Cyprus Denmark Finland France: Association Française du Lupus et autres Maladies auto-immunes AFL+, Lupus France Germany Greece
- [Patients Organisations RP](https://reconnet.ern-net.eu/patients-organisations-rp/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: RELAPSING POLYCHONDRITIS RP Patients’ Organisations European & UK THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON RP CAN BE SEEN HERE.
- [Patients Organisations IIMS](https://reconnet.ern-net.eu/patients-organisations-iims/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: IDIOPATHIC INFLAMMATORY MYOPATHIES IIM Patients’ Organisations United Kingdom THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON IIM CAN BE SEEN HERE.
- [Patients Organisations EDS](https://reconnet.ern-net.eu/patients-organisations-eds/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: EHLERS-DANLOS SYNDROME EDS Patients’ Organisations THE DEDICATED ERN RECONNET YOUTUBE PLAYLIST THAT COLLECTS WEBINARS FOCUSED ON EDS CAN BE SEEN HERE. Austria Belgium: Bindweefsel, Groupe d’Entraide des Syndromes d’Ehlers-Danlos Denmark France: Association française des Syndromes d’Ehlers-Danlos (afsed), AssoSED1+, Union Nationale des Syndromes d’Ehlers-Danlos (unsed) Finland Germany: Deutsche Ehlers-Danlos Initiative e.
- [Patients Organisations APS](https://reconnet.ern-net.eu/patients-organisations-aps/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Disease: ANTIPHOPSHOLIPID SYNDROME APS Patients’ Organisations Germany Netherlands Spain United Kingdom The dedicated ERN ReCONNET YouTube Playlist that collects webinars focused on APS can be seen here.
- [Members - IT - Tor Vergata](https://reconnet.ern-net.eu/members-it-tor-vergata/) - ERN ReCONNET Our Network Members Fondazione Policlinico Tor Vergata Roma City, Country: Rome, Italy. Website: https://www.ptvonline.it/ Healthcare Provider Representative: Dr. Maria Sole Chimenti Role in the ERN: HCP full member. Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic Inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis
- [Members - NL - Erasmus MC University Medical Center Rotterdam - Rotterdam](https://reconnet.ern-net.eu/nl-erasmus-mc-university-medical-center-rotterdam-rotterdam/) - ERN ReCONNET Our Network Members Erasmus University Medical Center City, Country: Rotterdam, the Netherlands. Website: www.erasmusmc.nl/immunologie Healthcare Provider Representative: Prof. P.M. van Hagen / Dr. V.A.S.H. Dalm. Role in the ERN: HCP full member. Areas of expertise in the ERN: Ehlers-Danlos Syndromes (EDS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Sjögren’s Syndrome (SS), Systemic Lupus Erythematosus (SLE) (pediatric), Systemic Sclerosis
- [Members - SP - Hospital Clínic de Barcelona y Hospital de Sant Joan de Déu](https://reconnet.ern-net.eu/members-sp-hospital-clinic-sant-joan-de-deu/) - ERN ReCONNET Our Network Members Hospital Clínic de Barcelona y Hospital de Sant Joan de Déu City, Country: Barcelona, Spain. Website: Hospital Clínic de Barcelona and Hospital de Sant Joan de Déu Healthcare Provider Representative: Prof. Ricard Cervera. Role in the ERN: HCP full member. Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-Related Disease (IgG4-RD), Idiopathic
- [about pregnancy](https://reconnet.ern-net.eu/wyntk-pregnancy/) - ERN ReCONNET Pregnancy and Rheumatology What you need to know about pregnancy Antiphospholipid Syndrome (APS) is a systemic autoimmune disease with the highest prevalence in women of childbearing age, characterized by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies (aPL). More info on APS can be found here. Here
- [Working Groups](https://reconnet.ern-net.eu/working-groups/) - ERN ReCONNET Working Groups Information about the ERN ReCONNET Working Groups ERN ReCONNET Working Groups (WG) & Task Forces (TF) The main objectives of ERN ReCONNET are: Realisation of the potential of European cooperation among rCTDs stakeholders, by providing a stable and fully functioning European infrastructure on rCTDs Provision of highly-specialised care for rCTDs patients
- [Our Network](https://reconnet.ern-net.eu/our-network/) - ERN ReCONNET Our Network Delivering high quality, innovative, sustainable and equitable standard of care and practice for better access to care of European Patients with rCTDs. Our Network ERN ReCONNET is the European Reference Network on Connective Tissue and Musculoskeletal Diseases. The main aim of ERN ReCONNET is to improve the management of rare connective
- [Members - IT - Padua](https://reconnet.ern-net.eu/members-it-padua/) - ERN ReCONNET Our Network Members AO Padua – Azienda Ospedale Università di Padova City, Country: Padua, Italy Website: https://www.aopd.veneto.it/Reumatologia Healthcare Provider Representative: Prof. Luca Iaccarino Healthcare Provider Sub-Representative: Prof. Margherita Zen Roles in the ERN: HCP full member, Undifferentiated Connective Tissue Diseases (UCTD) Disease Coordination Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-Related Disease
- [Patients Info on ERNs](https://reconnet.ern-net.eu/patients-info-on-erns/) - ERN ReCONNET Patients Info on ERNs Info on the European Reference Networks (ERNs) and ERN ReCONNET What are the ERNs? The ERNs gather doctors and researchers with high expertise in the fields of rare or low-prevalence and complex diseases. They are “virtual networks” which discuss the diagnosis and the best possible treatment for patients from
- [Cross-border healthcare](https://reconnet.ern-net.eu/cross-border-healthcare/) - ERN ReCONNET Patients Cross-border healthcare Cross-border healthcare Cross-border healthcare refers to healthcare received by an individual outside of their Member State of affiliation. EU citizens have the right to receive healthcare in any EU country and to be reimbursed for cross-border care by their home country. To guarantee this fundamental right, the EU utilises different
- [Our Network Affiliated Partners](https://reconnet.ern-net.eu/our-network-affiliated-partners/) - ERN ReCONNET Network ERN ReCONNET Affiliated Partners The purpose of ERNs is to enable the sharing of expertise and to improve access to care for patients across the European Union (EU), especially for complex or rare medical conditions that require highly specialised healthcare and a concentration of knowledge and resources. In order for ERNs to
- [Members - DK - Rigshospitalet](https://reconnet.ern-net.eu/members-dk-rigshospitalet/) - ERN ReCONNET Our Network Rigshospitalet City, Country: København, Denmark Website: https://www.rigshospitalet.dk/ Healthcare Provider Representative: Prof. Søren Jacobsen Role in the ERN: HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Relapsing polychondritis (RP), Systemic Lupus Erythematosus (SLE), Systemic Sclerosis (SSc), Undifferentiated Connective Tissue Disease (UCTD) Contact:Afdeling
- [WG ERN Young](https://reconnet.ern-net.eu/wg-ern-young/) - ERN ReCONNET ERN Young WG Information about the ERN Young WG ERN ReCONNET Young The main objectives of the ERN ReCONNET Young WG are to: Collect and address the needs and priorities of the younger generation of rCTDs healthcare professionals and patients Foster, in collaboration with the ERN ReCONNET WG on Education and Training, the
- [Members - G - Charité](https://reconnet.ern-net.eu/members-g-charite/) - ERN ReCONNET Our Network Members Charité Universitätsmedizin Berlin City, Country: Berlin, Germany Website: https://rheumatologie.charite.de/ Healthcare Provider Representative: Prof. Gerd Burmester Roles in the ERN: Steering Committee member, Patients’ Partnership WG Chair, HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD), Relapsing polychondritis (RP), Sjögren’s Syndrome
- [Members - FR - Assistance Publique-Hôpitaux de Paris, Hôpital Cochin - Paris](https://reconnet.ern-net.eu/members-f-assistance-publique-hôpitaux-de-paris-hôpital-cochin-paris/) - ERN ReCONNET Our Network Members Assistance Publique-Hôpitaux de Paris, Hôpital Cochin City, Country: Paris, France Website: http://www.maladiesautoimmunes-cochin.org/ Healthcare Provider Representative: Prof. Luc Mouthon Roles in the ERN: Mixed Connective Tissue Diseases Disease (MCTD) Coordination, HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related disease (IgG4-RD), Idiopathic inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases
- [Member - PL - Warsaw](https://reconnet.ern-net.eu/member-pl-warsaw/) - ERN ReCONNET Our Network Members Narodowy Instytut Geriatrii, Reumatologii i Rehabilitacji/ National Institute of Geriatrics, Rheumatology and Rehabilitation (NIGRiR) City, Country: Warsaw, Poland Website: https://spartanska.pl/ Healthcare Provider Representative: Prof. Marzena Olesińska Roles in the ERN: Mixed Connective Tissue Diseases Disease (MCTD) Coordination, HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), IgG4-related
- [WG Registries and eHealth](https://reconnet.ern-net.eu/wg-registries-and-ehealth/) - ERN ReCONNET Registries and eHealth WG Information about the Registries and eHealth WG Registries and eHealth The main objectives of the Registries and eHealth WG are: Strengthen the provision of highly specialised multi-disciplinary cross-border virtual consultations via the Clinical Patient Management System (CPMS) and improves its awareness and use in ERN ReCONNET Support the implementation
- [Members - PO - Centro Hospitalar de Lisboa Norte](https://reconnet.ern-net.eu/members-pt-centro-hospitalar-de-lisboa-norte/) - ERN ReCONNET Our Network Centro Hospitalar de Lisboa Norte, EPE Hospital de Santa Maria, Centro Hospitalar Lisboa Norte, EPE City, Country: Lisboa, Portugal Website: http://www.chln.pt/index.php/as-nossas-especialidades/medicina/reumatologia Healthcare Provider Representative: Prof. João Eurico Fonseca Roles in the ERN: Steering Committee member, Registries and eHealth WG Chair, HCP full member Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic
- [Members - GR - Laiko Athens](https://reconnet.ern-net.eu/members-gr-laiko-athens/) - ERN ReCONNET Our Network Members General Hospital of Athens “Laiko” Γενικό Νοσοκομείο Αθηνών «Λαϊκό» City, Country: Athens, Greece Website: https://www.laiko.gr/ Healthcare Provider Representative: Prof. Maria Tektonidou Roles in the ERN: HCP full member, Antiphospholipid Syndrome (APS) Disease Coordination Areas of expertise in the ERN: Antiphospholipid Syndrome (APS), Idiopathic Inflammatory Myopathies (IIM), IgG4-Related Disease (IgG4-RD), Mixed Connective Tissue Diseases (MCTD),
- [Members - SL - Ljubljana](https://reconnet.ern-net.eu/members-sl-ljubljana/) - ERN ReCONNET Our Network Members University Medical Centre Ljubljana City, Country: Ljubljana, Slovenia Website: https://www.kclj.si/ Healthcare Provider Representative: Prof. Tadej Avčin Roles in the ERN: HCP full member, Leader of the Translational Care Task Force Areas of expertise in the ERN: Antiphospholipid Syndrome (APS) (pediatric), Idiopathic Inflammatory Myopathies (IIM) (pediatric), Mixed Connective Tissue Diseases (MCTD)
- [Members - CZ - Prague](https://reconnet.ern-net.eu/members-cz-prague/) - ERN ReCONNET Our Network Members Institute of Rheumatology – Revmatologicky ustav, Prague Revmatologický ústav City, Country: Praha, Czech Republic Website: https://www.revma.cz/ Healthcare Provider Representative: Dr. Martin Klein Role in the ERN: HCP full member Areas of expertise in the ERN: Idiopathic Inflammatory Myopathies (IIM), Mixed Connective Tissue Disease (MCTD), Relapsing Polychondritis (RP), Sjögren’s Syndrome (SS),
- [Members - IT - AOU Meyer](https://reconnet.ern-net.eu/members-it-aou-meyer/) - ERN ReCONNET Our Network Members AOU Meyer City, Country: Firenze, Italy Website: https://www.meyer.it/cura-e-assistenza/attivita-sanitarie/87-reumatologia Healthcare Provider Representative: Prof. Gabriele Simonini Roles in the ERN: HCP full member, Leader of the Translational Care Task Force Areas of expertise in the ERN: Antiphospholipid Syndrome (APS) (pediatric), IgG4-related disease (IgG4-RD)(pediatric),Idiopathic Inflammatory Myopathies (IIM) (pediatric), Mixed Connective Tissue Diseases
- [Members - IT - San Raffaele](https://reconnet.ern-net.eu/members-it-san-raffaele/) - ERN ReCONNET Our Network Members IRCCS Ospedale San Raffaele di Milano Prof. Lorenzo Dagna Prof. Emanuel Della Torre IgG4-related diseases (IgG4-RD) Disease Coordinator City, Country: Milano, Italy Website: https://malattierare.hsr.it/it/index.html Healthcare Provider Representative: Prof. Lorenzo Dagna Roles in the ERN: HCP full member, Systemic Sclerosis (SSc) Disease Coordination, IgG4-Related Disease (IgG4-RD) Disease Coordination Areas of
- [Members - RO-County Emergency Clinical Hospital Cluj](https://reconnet.ern-net.eu/members-ro-county-emergency-clinical-hospital-cluj/) - ERN ReCONNET Our Network County Emergency Clinical Hospital Cluj Spitalul Clinic Judetan de Urgenta Cluj City, Country: Cluj, Romania Website: https://scjucluj.ro Healthcare Provider Representative: Prof. Simona Rednic Role in the ERN: HCP full member, Relapsing polychondritis (RP) Disease Coordination Areas of expertise in the ERN: Idiopathic Inflammatory Myopathies (IIM), Mixed Connective Tissue Diseases (MCTD),
- [Members - IT - AOU Careggi](https://reconnet.ern-net.eu/members-it-careggi/) - ERN ReCONNET Our Network Members Members AOU Careggi City, Country: Firenze, Italy. Website: https://www.aou-careggi.toscana.it Healthcare Provider Representative: Serena Guiducci Healthcare Provider Sub-Representative: Silvia Bellando Randone Role in the ERN: Full Member Area of expertise in the ERN ReCONNET: Systemic Sclerosis (SSc), Dermatomyositis, Polymyositis, Anti-synthetase Syndrome, Mixed Connective Tissue Disease (MCTD), Sjogren’s Syndrome (SS), Undifferentiated Connective
- [ERN ReCONNET across press media](https://reconnet.ern-net.eu/ern-reconnet-across-press-media/) - Rare Disease Day (RDD) 2024 Azienda Ospedaliero Universitaria Pisana Malattie rare: ERN ReCONNET accende un ponte di luce in Italia per le malattie rare Special focus: A glimpse of the FIRST ERN ReCONNET CONGRESS that was held in Brussel in April 2023 Interviews & Articles Video-Interviews 2024 Feb. 27th 2024. ACTIVA. O
- [Contact Us](https://reconnet.ern-net.eu/contact/) - ERN ReCONNET Contact Us . Contact Us Marta Mosca, MD, PhD Associate Professor in Rheumatology, University of Pisa, Italy Chief Rheumatology Unit Azienda Ospedaliero Universitaria Pisana, Pisa, Italy Via Roma, 67 – 56126 Pisa www.ao-pisa.toscana.it To get in touch with the Coordination Team for any specific info and/or requests, send an email to: ern.reconnet(at)ao-pisa.toscana.it To
- [Subscribe_our_Newsletter](https://reconnet.ern-net.eu/subscribe_our_newsletter/) - ERN ReCONNET Subscribe to our Newsletter . Subscribe to our Newsletter Stay updatedRegister nowStay updated with the ERN ReCONNET initiatives and actions, register to our Newsletter by sending a email to: ern.reconnet(at)gmail.com Subject: “ERN ReCONNET Newsletter Registration”. Look forward to it! To read all the ERN ReCONNET released NEWSLETTERS click here! ERN ReCONNET is a European
- [event-and-media-Useful links](https://reconnet.ern-net.eu/event-and-media-useful-links/) - ERN ReCONNET Events & Media Useful links Useful links European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources. The first ERNs were launched in March 2017, involving more than 900 highly-specialised
- [Events & Media](https://reconnet.ern-net.eu/event-and-media/) - ERN ReCONNET Events & Media News, dissemination materials, videos, gallery. Events and Media Here is a collection of the main ERN ReCONNET resource on Communication and Dissemination. Click to the links to get all the info and latest updates per each category. News Dissemination Materials Videos Meetings Press Media Newsletter & Social Media Useful
- [Our Activities](https://reconnet.ern-net.eu/our-activities/) - ERN ReCONNET Our Activities Involving Healthcare Providers across Europe. ERN ReCONNET’s Activities ERN ReCONNET’s activities include: Discussion on diagnosis and treatment of rare or low prevalence complex disease or conditions across national borders through the Clinical Patient Management System (CPMS), a secure web-based application, to provide advice to the medical center in charge of patients
- [RarERN Path](https://reconnet.ern-net.eu/rarern-path/) - ERN ReCONNET Activities RarERN Path RarERN Path The RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. Starting from existing standard methods for the creation and elaboration of
- [Patients Organisations NO](https://reconnet.ern-net.eu/patients-organisations-no/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Diseases covered by the ERN ReCONNET and Patients involvement. Patients’ Organisations Below you can find the patients’ organisations list, divided by diseases covered by ERN ReCONNET and organized by countries. If you are a member of an association that is not listed here, please send its name and references such as
- [Monitoring](https://reconnet.ern-net.eu/monitoring/) - activities continuous monitoring Documents Continuous monitoring of ERNs The ERNs’ legal framework sets out objectives, principles, and criteria of the Networks and defines the general implementation process including their assessment, approval, and evaluation. Once positively assessed and approved, the ERNs are expected to perform and fulfil their mission and goals to be evaluated at least
- [home-prova](https://reconnet.ern-net.eu/home-prova/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Welcome to ERN ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as
- [Event & Media Video](https://reconnet.ern-net.eu/event-and-media-video/) - ERN ReCONNET Events & Media Event & Media ERN ReCONNET videos collection Explore the ERN ReCONNET video collection to watch our Webinars, learn more about ERN ReCONNET actions and the ERNs ecosystem. Check out the new ERN ReCONNET video pills where we share opinions and comments from the ERN ReCONNET members. Don’t forget to subscribe to
- [Patients](https://reconnet.ern-net.eu/patients/) - ERN ReCONNET Patients Diseases covered by the ERN ReCONNET and Patients involvement. Patients European Reference Networks (ERNs) are networks involving healthcare providers across Europe. Their aim is to tackle rare and complex diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. ERN ReCONNET involves 26 HCPs from 8 different
- [Patients](https://reconnet.ern-net.eu/patients/) - ERN ReCONNET Patients Diseases covered by the ERN ReCONNET and Patients involvement. Patients European Reference Networks (ERNs) are networks involving healthcare providers across Europe. Their aim is to tackle rare and complex diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. ERN ReCONNET involves 26 HCPs from 8 different
- [Our Activities Publications](https://reconnet.ern-net.eu/our-activities-publications/) - ERN ReCONNET Activities Publications Publications
- [Team](https://reconnet.ern-net.eu/our-network/our-network-team/) - ERN ReCONNET Network Management Team Management Team The ERN ReCONNET Team, based on Azienda Ospedaliero Universitaria Pisana (Pisa, Italy), consists of four project managers – skilled in project management, financial reporting, communication, particularly in the field of health and rare diseases – and a scientific coordinator. [foogallery id=”8960″]
- [Diana Marinello](https://reconnet.ern-net.eu/team-marinello/) - ERN ReCONNET Team Diana Marinello Diana Marinello Diana Marinello is the network manager of ERN ReCONNET since june 2017. She is in charge of strategic and operational management of activities and stakeholders; supervision of the policies and procedures development and management; support to the Scientific Coordinator in the research activities of the Network and in
- [Other publications](https://reconnet.ern-net.eu/other-publications/) - ERN ReCONNET Activities Other publications Other publications An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET Matilde Bandeira, Federica Di Cianni, Diana Marinello, Laurent Arnaud, Sara Cannizzo, Claudio Carta, Alain Cornet, Sara M. Barril, Inita Bulina, Alessandro Ferraris, João Fonseca, Andrea Gaglioti, Maarten Limper,
- [Simone Ticciati](https://reconnet.ern-net.eu/team-ticciati/) - ERN ReCONNET Team Simone Ticciati Simone Ticciati Simone Ticciati is the communication manager of ERN ReCONNET since february 2018. He is in charge of external communication and dissemination of the project in the following areas: Communication plan, social network profiles (Twitter, Facebook, YouTube), website, newsletter, information material (brochures, leaflets, posters, etc.); collaboration to the Scientific
- [COVID-19 ERN-ReCONNET](https://reconnet.ern-net.eu/covid-19-ern-reconnet/) - ERN ReCONNET COVID-19 ERN ReCONNET posters and endorsed recommendations ERN ReCONNET posters on Systemic autoimmune diseases and vaccines ERN ReCONNET has endorsed the Filière de Santé des Maladies Auto-immunes et Auto-inflammatoires Rares (Fai2R) recommendations for treatment of patients with autoimmune or auto-inflammatory diseases. Thanks to the commitment of European patients advocacy groups, the recommendations have
- [Disease_RP](https://reconnet.ern-net.eu/disease_rp/) - ERN ReCONNET Disease Info Disease: Relapsing Polychondritis Relapsing Polychondritis (RP) Relapsing polychondritis (RP) is a rare systemic disorder characterized by recurrent and destructive inflammatory lesions of the cartilages of the nose, ears and tracheobronchial tree. Additional clinical features include ocular inflammation, audio-vestibular impairment, vasculitis, skin involvement, valvular insufficiency, and non-erosive arthritis. The pathogenesis of the
- [Disease_SLE](https://reconnet.ern-net.eu/disease_sle/) - ERN ReCONNET Disease Info Disease: Systemic Lupus Erythematosus Systemic Lupus Erythematosus (SLE) SLE is the paradigm of systemic autoimmune diseases characterized by a wide spectrum of clinical manifestations with an unpredictable relapsing-remitting course. SLE typically affects young women between 16 and 55 years and may involve almost all organs and tissues. Some of the most
- [Disease_SS](https://reconnet.ern-net.eu/disease_ss/) - ERN ReCONNET Disease Info Disease: Sjögren’s syndrome Sjögren’s syndrome Sjögren’s syndrome is a systemic autoimmune disease that involves particularly salivary and lachrymal glands. As a consequence, typically, patients complain of ocular and oral dryness and salivary gland swelling. Moreover, skin, nasal and vaginal dryness are quite common as well. In addition to dryness, other frequently
- [Disease_EDS](https://reconnet.ern-net.eu/disease_eds/) - ERN ReCONNET Disease Info Disease: Ehlers-Danlos Syndrome Ehlers-Danlos Syndrome (EDS) The term Ehlers-Danlos syndrome (EDS) include a clinically and genetically heterogeneous group of hereditary connective tissue disorders characterized by remarkable joint hypermobility, abnormal skin texture and tissue fragility. The advent of next generation sequencing into genetic research and diagnostics expanded the knowledge on the molecular
- [CPGS & Clinical Tools](https://reconnet.ern-net.eu/cpgs-clinical-tools/) - ERN ReCONNET Activities Guidelines & Clinical Tools Guidelines & Clinical Tools In 2018, the European Commission launched the Tender No SANTE/2018/B3/030 European Reference Network: Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) with the overall purpose of provide assistance to the ERNs and their healthcare providers in the process of the development, appraisal
- [Expert Panel on Clinical Practice Guidelines and Clinical-Decision Making Tools](https://reconnet.ern-net.eu/expert_panel/) - ERN ReCONNET Activities Expert Panel on Clinical Practice Guidelines and Clinical-Decision Support Tools Expert Panel on Clinical Practice Guidelines and Clinical-Decision Support Tools The European Commission has launched a new programme for ERNs dedicated to Clinical practice Guidelines. A consortium of 5 Health Technologies Assessment Agencies and 2 Specialized Health Training Institutions won the EC Tender.
- [Disease_MCTD](https://reconnet.ern-net.eu/disease_mctd/) - ERN ReCONNET Disease Info Disease: Mixed Connective Tissue Disease Mixed Connective Tissue Disease (MCTD) Mixed connective tissue disease (MCTD) also known as Sharp’s syndrome was described for the first time in 1972 by Sharp GC. and concerns a systemic autoimmune disease typified by overlapping features between two or more systemic autoimmune diseases (primarily Systemic Lupus
- [Disease_IIMs](https://reconnet.ern-net.eu/disease_iims/) - ERN ReCONNET Disease Info Disease:Idiopathic Inflammatory Myopathies Idiopathic Inflammatory Myopathies (IIMs) Idiopathic inflammatory Myopathies (IIMs) include a large group of autoimmune conditions mainly characterized by the occurrence of muscle inflammation. Included diseases are adult polymyositis (PM), adult dermatomyositis (DM), necrotizing autoimmune myositis, antisynthetase syndrome (ASSD), juvenile DM and PM and inclusion body myositis (IBM). IIMs
- [Disease_UCTD](https://reconnet.ern-net.eu/disease_uctd/) - ERN ReCONNET Disease Info Disease: Undifferentiated Connective Tissue Disease Undifferentiated Connective Tissue Disease (UCTD) The term UCTD refers to unclassifiable systemic autoimmune diseases that share clinical and serological manifestations with definite connective tissue diseases (CTDs) but not fulfill any of the existing classification criteria. In UCTD, symptoms and autoimmune features are generally milder than in
- [COVID-19 European Commission](https://reconnet.ern-net.eu/covid-19-european-commission/) - ERN ReCONNET COVID-19 European Commission European Commission The European Commission is coordinating a common European response to the coronavirus outbreak, taking resolute action to reinforce the public health sectors in the European Union. In the context of the fight against the coronavirus pandemic, the European Commission launched the COVID-19 Clinical Management Support System (CMSS). The
- [State of the art on CPGs](https://reconnet.ern-net.eu/state-art-cpgs/) - ERN ReCONNET Activities State of the art on CPGs State of the art on CPGs State of the Art on clinical practice guidelines on rare and complex Connective Tissue Diseases The Supplement presents a short report on the first year of activity of the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal
- [Andrea Gaglioti](https://reconnet.ern-net.eu/team-gaglioti/) - ERN ReCONNET Team Andrea Gaglioti Andrea Gaglioti Andrea Gaglioti is the financial and administrative manager of ERN ReCONNET since june 2017. He is in charge of financial management of ERN budget; planning and monitoring of the ERN budget for ERN proposals and preparation of Financial Reports; interaction with the Healthcare provider (AOUP) administrative structures; adaptation
- [Rosaria Talarico](https://reconnet.ern-net.eu/team-talarico/) - ERN ReCONNET Team Rosaria Talarico Rosaria Talarico Rosaria Talarico is the scientific coordinator of ERN ReCONNET since march 2017. She is in charge of coordination of the research activities of ERN ReCONNET; methodological and strategic support to the ERN and to the other members of the Coordination team; management of the scientific publications of ERN
- [Sara Cannizzo](https://reconnet.ern-net.eu/team-cannizzo/) - ERN ReCONNET Team Sara Cannizzo Sara Cannizzo Sara Cannizzo is the network manager of ERN ReCONNET since february 2018. She is in charge of health economics management; management of the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (TogethERN ReCONNET); supervision of the policies and procedures development and
- [COVID-19 National Societies of Rheumatology](https://reconnet.ern-net.eu/covid-19-national-societies-of-rheumatology/) - ERN ReCONNET COVID-19 National Societies of Rheumatology recommendations National Societies of Rheumatology recommendations The European National Societies of Rheumatology are responding to the COVID-19 emergency through recommendations and statements addressed to healthcare professionals and patients. Click on the images below to open the corresponding pages. . [foogallery id=”8449″]
- [Documents](https://reconnet.ern-net.eu/ern-reconnet-documents/) - ERN ReCONNET Activities ERN ReCONNET documents ERN ReCONNET documents New rapidly evolving challenges on the management and vaccination of rare and complex connective tissue and musculoskeletal diseases patients in the COVID-19 era: points of view of the ERN ReCONNET R. Talarico*, C. Tani*, C. Cardelli, F. Di Cianni, J.C. Abril, S. Aguilera, T. Alexander, Z.
- [SSc lay version](https://reconnet.ern-net.eu/ssc-lv/) - ERN ReCONNET Lay Versions Disease: Systemic Sclerosis Systemic Sclerosis Lay Versions Lay versions are an adaptation of the original documents (recommendations, clinical practice guidelines, etc.) into an English-lay version, in order to facilitate the patients’ access to information about their disease and thank to this to make well-informed decision about their health. This lay version is
- [SSc lay versions 2](https://reconnet.ern-net.eu/ssc-lv-2/) - ERN ReCONNET Lay Versions Disease: Systemic Sclerosis Systemic Sclerosis Lay Versions Introduction “Scleroderma”, also known as Systemic Sclerosis (SSc), is a rare connective tissue disease. The immune system attacks the body’s own tissues (=autoimmunity) affecting the entire body including the skin and the internal organs (heart, lungs, kidneys, the gastrointestinal system as well as blood
- [Disease_APS](https://reconnet.ern-net.eu/disease_aps/) - ERN ReCONNET Disease Info Disease: Antiphospholipid Syndrome Antiphospholipid Syndrome (APS) Antiphospholipid syndrome (APS) is a systemic autoimmune disease with the highest prevalence in women of childbearing age, characterized by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies (aPL). aPL are able to activate the coagulation system; indeed, APS
- [What you need to know](https://reconnet.ern-net.eu/what-you-need-to-know/) - ERN ReCONNET Patients What you need to know What you need to know about Here you could find some useful informations and downloadable materials about pregnancy, Clinical Practice Guidelines, etc. developed by ERN ReCONNET ePAGs. You can print it out, download it, disseminate it however you want. [foogallery id=”8838″]
- [about CPGs](https://reconnet.ern-net.eu/about-cpgs/) - ERN ReCONNET Patients What you need to know about Clinical Practice Guidelines What you need to know about CPGs Let’s start with the ERN ReCONNET webinar on Clinical Practice Guidelines and the related infographic. Then you could check out the Supplement on State of the art on Clinical Practice Guidelines, published on RMD Open. This
- [Patients Our EPAGS](https://reconnet.ern-net.eu/patients-our-epags/) - ERN ReCONNET Patients EPAGS European Patients Advocacy Groups ERN ReCONNET ePAG Advocates [foogallery id=”8818″]
- [COVID-19 EURORDIS](https://reconnet.ern-net.eu/covid-19-eurordis/) - ERN ReCONNET COVID-19 European Organisation for Rare Diseases recommendations EURORDIS recommendations EURORDIS has created a COVID-19 Information Resource Centre where you can find statements, sources of official information, and information/ activities organised in response to the pandemic that EURORDIS has received through the network. EURORDIS is also conducting a survey (through the Rare Barometer Voices
- [Update on COVID-19 outbreak](https://reconnet.ern-net.eu/update-on-covid-19-outbreak/) - ERN ReCONNET COVID-19 Update on COVID-19 outbreak Update on COVID-19 outbreak COVID-19 is a disease caused by a new type of coronavirus (SARS-CoV-2), first identified in December 2019 in the Chinese municipality of Wuhan. At the end of February 2020, Italy reported a significant increase of COVID-19 cases concentrated in the northern regions of the country. By March 2020, all
- [COVID-19 WHO](https://reconnet.ern-net.eu/covid-19-who/) - ERN ReCONNET COVID-19 World Health Organization recommendations WHO recommendations The World Health Organization provides an impressive amount of information and downloadable material in the COVID-19 section of its website. The following are available: advices for public, situation reports, technical guidance by topic, media resources, training and exercises, travel advice, etc. [foogallery id=”8522″]
- [COVID-19 ECDC](https://reconnet.ern-net.eu/covid-19-ecdc/) - ERN ReCONNET COVID-19 European Centre for Disease Prevention and Control recommendations ECDC recommendations The European Centre for Disease Prevention and Control is closely monitoring the COVID-19 outbreak, providing risk assessments, public health guidance, and advice on response activities to EU Member States and the EU Commission. In the dedicated webpage you can find the latest
- [COVID-19 EMA](https://reconnet.ern-net.eu/covid-19-ema/) - ERN ReCONNET COVID-19 European Medicine Agency recommendations EMA recommendations The European Medicines Agency is contributing to global efforts to save lives during the COVID-19 pandemic by expediting the development and approval of safe and effective treatments and vaccines, supporting the continued availability of medicines in the European Union, and providing reliable information to patients and
- [COVID-19 ACR](https://reconnet.ern-net.eu/covid-19-acr/) - ERN ReCONNET COVID-19 American College of Rheumatology recommendations ACR recommendations The American College of Rheumatology has developed clinical guidance for the care of adult patients with rheumatic diseases during the COVID-19 pandemic. Populations considered include patients with a documented COVID-19 infection, those who are stable following exposure to SARS-CoV-2 (but without known infection), and patients
- [COVID-19 EULAR](https://reconnet.ern-net.eu/covid-19-eular/) - ERN ReCONNET COVID-19 European League Against Rheumatism recommendations EULAR recommendations The European League Against Rheumatism (EULAR) has developed a Rheumatic Musculoskeletal Diseases and COVID-19 repository where you can find the EULAR guidance for patients and an array of useful resources about the current COVID-19 outbreak to give patients with Rheumatic Musculoskeletal Diseases the best possible
- [Update on COVID-19 outbreak backup](https://reconnet.ern-net.eu/update-on-covid-19-outbreak-backup/) - ERN ReCONNET COVID-19 Update on COVID-19 outbreak Update on COVID-19 outbreak COVID-19 is a disease caused by a new type of coronavirus (SARS-CoV-2), first identified in December 2019 in the Chinese municipality of Wuhan. At the end of February 2020, Italy reported a significant increase of COVID-19 cases concentrated in the northern regions of the country. By March 2020, all
- [Subscribe Newsletter Confirmation](https://reconnet.ern-net.eu/subscribe-newsletter-confirmation/) - ERN ReCONNET Subscribe to our Newsletter Thank you! Thank you for subscribing to the ERN ReCONNET Newsletter! You will receive our Newsletter every three months. If you haven’t seen them yet, you can read all the previous newsletters here. You could stop receiving the Newsletter at any time by simply clicking on the “Unsubscribe” link
- [Subscribe newsletter backup](https://reconnet.ern-net.eu/subscribe-newsletter-backup/) - ERN ReCONNET Subscribe to our Newsletter . Subscribe to our Newsletter I consent to ERN ReCONNET European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases collecting my details through this form. Δ ERN ReCONNET is a European Reference Network (ERN) approved by the ERN Board of Member States. The ERNs are co-funded by
- [home backup buona](https://reconnet.ern-net.eu/home-backup-buona/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Updates on COVID19 Welcome to ERN ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune
- [home backup](https://reconnet.ern-net.eu/home-backup/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Recommendations on COVID19 Welcome to ERN ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune
- [Patients Organisations](https://reconnet.ern-net.eu/patients-organisations/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Diseases covered by the ERN ReCONNET and Patients involvement. Patients’ Organisations Below you can find the patients’ organisations list, divided by diseases covered by ERN ReCONNET and by countries. If you are a member of an association that is not listed here, please send its name and references (website, contact person,
- [Patients Organisations OLD](https://reconnet.ern-net.eu/patients-organisations-old/) - ERN ReCONNET PATIENTS’ ORGANISATIONS Diseases covered by the ERN ReCONNET and Patients involvement. Patients’ Organisations Below you can find the patient organisations list, divided by diseases covered by ERN ReCONNET and by countries. If you are a member of an association that is not listed here, please send its name and references (website, contact person,
- [Our Network Governance](https://reconnet.ern-net.eu/our-network-governance/) - ERN ReCONNET Our Network Governance Governance Among other initiatives, the ERN ReCONNET is mapping the existing patient’s pathways followed for every rare connective tissue diseases (rCTDs) covered by ERN ReCONNET in all the Healthcare Providers of the Network. The aim of this work is to identify the current practice across the different ERN ReCONNET centres
- [Our Network How to join us](https://reconnet.ern-net.eu/our-network-how-to-join-us/) - ERN ReCONNET Our Network How to join us How to join us Among other initiatives, the ERN ReCONNET is mapping the existing patient’s pathways followed for every rare connective tissue diseases (rCTDs) covered by ERN ReCONNET in all the Healthcare Providers of the Network. The aim of this work is to identify the current practice
- [Patients Patients Involvement](https://reconnet.ern-net.eu/patients-patients-involvement/) - ERN ReCONNET Patients Patients Involvement Patients Involvement
- [Our Activities Gallery](https://reconnet.ern-net.eu/our-activities-gallery/) - ERN ReCONNET Our Activities Gallery Gallery
- [Our Activities Surveys](https://reconnet.ern-net.eu/our-activities-surveys/) - ERN ReCONNET Our Activities Surveys Surveys
- [Our Activities Webinars](https://reconnet.ern-net.eu/our-activities-webinars/) - ERN ReCONNET Our Activities Webinars Webinars
- [Our Activities Virtual Consultation](https://reconnet.ern-net.eu/our-activities-virtual-consultation/) - ERN ReCONNET Our Activities Virtual Consultation Virtual Consultation
- [Our Activities Guidelines](https://reconnet.ern-net.eu/our-activities-guidelines/) - ERN ReCONNET Our Activities Guidelines Guidelines
- [Governance](https://reconnet.ern-net.eu/governance/) - ERN ReCONNET Our Network Governance Governance contenuto da inserire prova prova prova
- [Disease_IgG4](https://reconnet.ern-net.eu/disease_igg4/) - ERN ReCONNET Disease Info Disease: IgG4-related disease IgG4-related disease IgG4-related diseases (IgG4-RD) are a group of chronic relapsing remitting inflammatory conditions characterized by tissue infiltration with lymphocytes and IgG4-secreting plasma cells and subsequent tissue fibrosis. Frequently, tissue-destructive lesions may develop resulting from deposition of connective tissue in affected sites, even with organ failure. IgG4-RD is
- [members template inserimento foto](https://reconnet.ern-net.eu/members-template-inserimento-foto/) - ERN ReCONNET Our Network Members Members Cochin Hospital City, Country: Paris, France. Website: http://www.maladiesautoimmunes-cochin.org/ Healthcare Provider Representative: Prof. Luc MOUTHON and Prof Nathalie COSTEDOAT-CHALUMEAU. Role in the ERN: Coordinating centre, Steering Committee member, HCP full member. Area of expertise in the ERN: Antiphospholipid syndrome, Polymyositis, Dermatomyositis, Anti-synthetase syndrome, Mixed connective tissue diseases, Sjögren’s syndrome, Systemic
- [template prove](https://reconnet.ern-net.eu/template-prove/) - I am text block. Click edit button to change this text. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo.
- [Our Work](https://reconnet.ern-net.eu/our-work/) - ERN ReCONNET Events & Media News, dissemination materials, videos, gallery. Events and Media Section 1 I am text block. Click edit button to change this text. Lorem ipsum dolor sit amet, consectetur adipiscing elit. Ut elit tellus, luctus nec ullamcorper mattis, pulvinar dapibus leo. Hover Box Element Hover Box Element Click edit button to change
- [Affiliated partners](https://reconnet.ern-net.eu/affiliated-partners/) - ERN ReCONNET Our Network Affiliated partners Affiliated partners The 55th Congress of Italian Society of Rheumatology will be held from 21st to 24th November 2018 in Rimini, Italy. ERN ReCONNET will be present to the Congress with a booth. This is the main event for the italian rheumatologists and this year ERN ReCONNET is starring in the
- [Work Packages](https://reconnet.ern-net.eu/work-packages/) - ERN ReCONNET Our Network Work Packages Work Packages The 55th Congress of Italian Society of Rheumatology will be held from 21st to 24th November 2018 in Rimini, Italy. ERN ReCONNET will be present to the Congress with a booth. This is the main event for the italian rheumatologists and this year ERN ReCONNET is starring in
- [ESAB](https://reconnet.ern-net.eu/esab/) - ERN ReCONNET Our Network ESAB ESAB The 55th Congress of Italian Society of Rheumatology will be held from 21st to 24th November 2018 in Rimini, Italy. ERN ReCONNET will be present to the Congress with a booth. This is the main event for the italian rheumatologists and this year ERN ReCONNET is starring in the International
- [Disease Info work-in-progress](https://reconnet.ern-net.eu/disease-info-work-in-progress/) - ERN ReCONNET Disease Info Information about the diseases covered by the ERN ReCONNET Disease Info Click on the single disease to find a short description and a list of useful references. [foogallery id=”6816″]
- [Disease Info Old](https://reconnet.ern-net.eu/disease-info-old/) - ERN ReCONNET Disease Info Information about the diseases covered by the ERN ReCONNET Disease Info Click on the single disease to find a short description and a list of useful references. Systemic sclerosis Mixed Connective Tissue Disease Idiopathic inflammatory Myopathies Antiphospholipid Syndrome Undifferentiated Connective Tissue Disease IgG4 related Diseases Relapsing Polychondritis Systemic Lupus Erythematosus Sjögren’s Syndrome
- [Home](https://reconnet.ern-net.eu/home/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Welcome to ERN ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as
- [Home old](https://reconnet.ern-net.eu/home-old/) - ERN ReCONNET Welcome Welcome to the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases Website. An information hub with a patient-centered approach Welcome to ERN ERN ReCONNET is the European Reference Network on Rare and Complex Connective Tissue and Musculoskeletal Diseases. These include hereditary conditions, and systemic autoimmune diseases such as
- [sitemap](https://reconnet.ern-net.eu/sitemap/)
- [Member new page](https://reconnet.ern-net.eu/member-new-page/) - ERN ReCONNET Our Network Members Members European Reference Network on connective tissue and musculoskeletal diseases Members Belgium University Hospitals Saint-Luc University Hospital Ghent France Assistance Publique-Hôpitaux de Paris, Hôpital Pitié-Salepétrière Assistance Publique-Hôpitaux de Paris, Hôpital Cochin CHRU de Lille Hôpitaux Universitaires de Strasbourg Germany Charité Universitätsmedizin Berlin Kerckhoff Klinik Universitätsklinikum Köln Universitätsklinikum Düsseldorf Italy Civil
- [Prova Event & Media Gallery](https://reconnet.ern-net.eu/event-and-media-gallery/) - ERN ReCONNET Events & Media Image Gallery Image Gallery Presentiamo una galleria di immagini che fanno conoscere meglio la realta’ di ERN 022_mg_3239 074_mg_3482 080_mg_5196-copia
- [Newsletter](https://reconnet.ern-net.eu/newsletter/)
- [Briefing medici](https://reconnet.ern-net.eu/imagegallery-briefing-medici/) - [foogallery id="5593"]
- [Day Hospital](https://reconnet.ern-net.eu/imagegallery-day-hospital/) - [foogallery id="5650"]
- [Ambulatorio Ulcere](https://reconnet.ern-net.eu/imagegallery-ambulatorio-ulcere/) - [foogallery id="5636"]
- [Ambulatorio Analisi e centro prelievi](https://reconnet.ern-net.eu/imagegallery-ambulatorio-analisi-e-centro-prelievi/) - [foogallery id="5707"]
- [Ambulatorio Dietologico](https://reconnet.ern-net.eu/imagegallery-ambulatorio-dietologico/) - [foogallery id="5733"]
- [Corso Le malattie rare in reumatologia](https://reconnet.ern-net.eu/imagegallery-corso-le-malattie-rare-in-reumatologia/) - [foogallery id="5747"]
- [Formazione aula](https://reconnet.ern-net.eu/imagegallery-formazione-aula/) - [foogallery id="5541"]
- [Ambulatorio Ecografico](https://reconnet.ern-net.eu/imagegallery-ambulatorio-ecografico/) - [foogallery id="5682"]
- [Accettazione Amministrativa](https://reconnet.ern-net.eu/imagegallery-accettazione-amministrativa/) - [foogallery id="5674"]
- [ImageGallery MASTER](https://reconnet.ern-net.eu/imagegallery-master/) - [foogallery id="5818"]
- [copia prova](https://reconnet.ern-net.eu/copia-prova/) - ERN ReCONNET Our Network Disease: Antiphospholipid Syndrome Antiphospholipid Syndrome (APS) Antiphospholipid syndrome (APS) is a systemic autoimmune disease with the highest prevalence in women of childbearing age, characterized by venous and/or arterial thrombosis, pregnancy complications and the presence of specific autoantibodies called antiphospholipid antibodies (aPL). aPL are able to activate the coagulation system; indeed, APS
- [about us prove](https://reconnet.ern-net.eu/about-us-prove/) - depend on us for life caring hearts passion for healing Caring for the Growing Needs of Our Community. Details treatment Mauris blandit aliquet elit eget tincidunt pulvinar vivamus suscipit tortor eget felis porttitor volutpat praesent sapien massa convallis pellen tesque nec. Curabitur non nulla amet nisl tempus convallis quis ac lectus donec rutrum congue leo eget
- [Manage Subscriptions](https://reconnet.ern-net.eu/manage-subscriptions/) - [newsletters_management]
- [Contact Us](https://reconnet.ern-net.eu/contact-us/) - trust us for life taking care of you is our mission Caring for the Growing Needs of Our Community. Details hospitals united states Patricia C. Amedee 4401 Waldeck Street Grapevine Nashville, TX 76051 +99 (0) 101 0000 888 info@yourdomain.com On the Map england Patricia C. Amedee 4401 Waldeck Street Grapevine Nashville, TX 76051 +99 (0)
- [Services](https://reconnet.ern-net.eu/services/) - trust us for life serious medicine extraordinary care Caring for the Growing Needs of Our Community. Details services Mauris blandit aliquet elit, eget tinc idunt nibh pulvinar vivamus suscipit tortor eget felis porttitor volutpat praesent sapien massa con vallis pellen tesque nec. Curabitur non nulla amet nisl tempus convallis quis ac lectus donec rutrum congue
- [About Us](https://reconnet.ern-net.eu/about-us/) - depend on us for life caring hearts passion for healing Caring for the Growing Needs of Our Community. Details treatment Mauris blandit aliquet elit eget tincidunt pulvinar vivamus suscipit tortor eget felis porttitor volutpat praesent sapien massa convallis pellen tesque nec. Curabitur non nulla amet nisl tempus convallis quis ac lectus donec rutrum congue leo eget

## Employees

- [Lorenzo B. Smith](https://reconnet.ern-net.eu/team/lorenzo-b-smith/)
- [Christine Lawson](https://reconnet.ern-net.eu/team/christine-lawson/)
- [Mark K. Mays](https://reconnet.ern-net.eu/team/mark-k-mays/)
- [Jennifer Smart](https://reconnet.ern-net.eu/team/jennifer-smart/)
- [Sara G. Christian](https://reconnet.ern-net.eu/team/sara-g-christian/)
- [Aisha Stewart](https://reconnet.ern-net.eu/team/aisha-stewart/)

## News

- [New Booklet on ERNs published by the European Commission](https://reconnet.ern-net.eu/news-posts/new-booklet-on-erns-published-by-the-european-commission/) - Just a few days ahead of the 2025 Rare Disease Day and the European Commission has recently published a series of documents on Rare Diseases, including a new Booklet “European Reference Networks. A success story for patients living with a rare disease“. Find out more about ERN ReCONNET and other ERNs at this link ern-success-stories_feb2025

## Portfolios

- [prova portfolio](https://reconnet.ern-net.eu/portfolio-posts/5082/)

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## Tags

- [ePAG](https://reconnet.ern-net.eu/tag/epag/)
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