I am a patient advocate and Patient Relationship Manager at HCM Patient Foundation, and I live with non-obstructive Hypertrophic Cardiomyopathy (HCM). I was diagnosed at the age of 24 while graduating in Physical Education. After my diagnosis, I spent several years between Australia and London, learning to understand and accept what living with a chronic heart condition meant.

I returned to Italy in 2019, where, following the progression of my disease, I received a subcutaneous implantable cardioverter-defibrillator (S-ICD). Although initially something I hoped I would never need, the device ultimately saved my life.

Living with HCM has also taught me that, despite the challenges of a chronic condition, it is possible to live a full and meaningful life, sometimes with a few adaptations and by learning to listen to and respect one’s own body. For me, this means continuing to travel, pursue personal and professional goals, and enjoy everyday life while understanding my own limits and knowing when to slow down. I believe that respecting oneself does not mean putting life on hold, but finding a balance that allows you to keep living it fully.

This experience became a turning point. I created my Instagram platform, Living with HCM and ICD, to share my experience and connect with people living with HCM and other inherited cardiomyopathies, as well as those facing ICD implantation. Over time, the platform has grown into a community where patients and families can find support, information, and the reassurance that they are not alone.

I am a member and patient testimonial of AICARM, the Italian Association of Cardiomyopathies, and represent AICARM as an ePAG representative within the ERN GUARD network. Through my advocacy work, I promote patient education, peer support, psychological wellbeing, and a more patient-centred approach to healthcare.

I am passionate about making sure that the patient voice is heard in healthcare, research, and policy, and about helping patients feel informed, supported, and involved in decisions about their health.

Today, I combine my lived experience with my professional role in patient relations, working to build stronger connections between patients, healthcare professionals, organisations, and the wider cardiomyopathy community.♥

We are pleased to invite you to the upcoming ERN GUARD-Heart Webinar, taking place on Wednesday, 16 September 2026 from 17:00 to 18:00 CEST. This expert-led session will explore the complex relationship between genetic factors and arrhythmic risks in patients with DCM and ACM. Webinar will cover key topics: Clinical Case Presentations: Direct insights from real-world medical cases; Arrhythmic Risk in Genetically Determined DCM/NDLVC: Navigating the era of risk scoring and Arrhythmic Risk in Gene Elusive Patients: Moving towards a personalized clinical approach.

Expert Chairs & Speakers:
The webinar will be chaired by ERN experts Prof. Philippe Charron (France) and Prof. Marco Merlo (Italy). Featured speakers include Dr. Federico Garoia (Italy), Dr. Karim Wahbi (France), and Dr. Sean Jurgens (Amsterdam UMC, The Netherlands) .

Accreditation:
This webinar is officially accredited by the European Accreditation Council for Continuing Medical Education (EACCME®) with 1.0 European CME credit (ECMEC®).

Registration & Access:
Participation is free, but registration is required. Registered participants will receive the webinar access link a few days prior to the event.♥

The DG SANTE team is hosting live walkthrough of CPMS 2.0 this autumn with 4 sessions lined up for Q4. Each session is led by European Commission trainers and lasts about an hour: 30 minutes of training and 30 minutes for Q&A. These sessions are recommended for anyone who hasn’t used the CPMS 2.0 before and needs a guided session to help them get started. ♥

🗓️15 September 2026 | 10:00 CET
🗓️ 13 October 2026 | 15:00 CET
🗓️ 12 November 2026 | 15:00 CET
🗓️ 8 December 2026 | 10:00 CET

Each session covers the key CPMS 2.0 functions, including patient records and enrolment, adding files and participants, conducting discussions, scheduling meetings, user settings, and chat.

ERN GUARD-Heart has launched biweekly CPMS online case discussions as of May 2026, held on the first and third Monday/or Wednesday of each month at 17:00 CET. Each one-hour session brings together ERN centres to discuss three pre-submitted clinical cases, supported by expert input shared in advance via CPMS. Case preparation and chairing rotate across centres (see list), encouraging broad participation and knowledge exchange♥. 

We are pleased to share that Sant Joan de Deu Barcelona is organizing International Symposium on Pediatric Inherited Cardiac Disorders from 14 to 16 October 2026. The symposium will provide an advanced, practice-oriented update on emerging therapies and ultra-rare inherited arrhythmia syndromes, with a particular focus on paediatric Brugada syndrome. The programme will bring together clinicians, researchers, geneticists, data scientists, nurses, patient representatives and early-career professionals from across Europe and beyond. Participants will have the opportunity to engage with international experts through state-of-the-art lectures, real-world case discussions, multidisciplinary panels and hands-on workshops. Key topics include advances in gene therapy and clinical trials, risk stratification, artificial intelligence, remote monitoring, genetics and precision medicine. The event will also include the first European networking event dedicated to paediatric Brugada syndrome and contribute to laying the foundations for the European BRUPED Registry and the BRUPED-RISK precision medicine initiative. The symposium is available in both in-person and online format♥.

Registration deadline is 13 October. For further information and registration please visit the event webpage.

Through the ERN GUARD-Heart Exchange Programme, MUDr. Silvia Elisabeth Henrich, a Resident Physician at the Institute for Genetics of Heart Diseases (IfGH) at University Hospital Münster (UKM), spent a week at the Inherited Cardiac Condition Clinic at Copenhagen University Hospital. The visit offered her valuable insights into Denmark's high-volume care, nationwide research registries, and multidisciplinary workflows. She observed specialized patient management across the cardiac arrest unit, outpatient clinics, and a detailed autopsy session. A major highlight for her was seeing how complex genetic findings were communicated to families with remarkable clarity and compassion. The visit also offered valuable perspectives on real-time documentation and close collaboration between physicians, technicians, and specialised nurses. These experiences provide new perspectives that may complement existing structures and inspire further development of patient pathways and genetic testing processes at UKM. Ultimately, the exchange demonstrates the value of European collaboration: by sharing expertise, approaches, and experiences across centres, both sides can learn from each other and contribute to continuously improving care for patients with inherited cardiac diseases♥.

Help us showcase the real face of our network by contributing your clinical photos to the new ERN GUARD-Heart website. We are inviting all full members and affiliated partners to submit high-resolution images that feature our actual experts actively engaged in identifiable cardiology work, such as performing echocardiographies, reading ECGs/EKGs, or collaborating in the clinic. By sharing your photos, you will help us highlight the true expertise, diversity, and dedication within our network. Please ensure all submitted images comply with your institution's patient privacy and consent regulations. The deadline for all submissions is the end of September. Send your photos here ♥. 

Applications are now open for the 2027 EURORDIS Open Academy x ERDERA Schools from 7-10 June in Barcelona. Two in-person training courses for 80 members of the rare disease community are available this year. The School on Medicines Research and Development is aimed at rare disease patient advocates and researchers interested in areas such as therapeutic development, clinical trials, regulatory pathways, health technology assessment and patient engagement. The School on Scientific Innovation and Translational Research is designed for patient advocates and early-career researchers, including PhD candidates and researchers within two years of completing their PhD, with a focus on areas such as diagnostic care pathways, translational research, genomics, ethics and patient-generated data♥.

Application deadline is 16 October.