The European Commission has opened applications for Affiliated Partners within the European Reference Networks.
This is an opportunity for healthcare centres in countries without full ERN coverage, namely Bulgaria, Cyprus, Latvia, Greece or Norway to collaborate with ERN GUARD-Heart and access the network's expertise in rare and complex diseases of the heart across the European Union. The deadline for applications is 1 September 2026. Centres interested in applying should contact their National Competent Authority in good time.
Please disseminate if you know colleagues in these countries!
Full information about the call, timeline, and application procedure is available on our website♥

Founded in 2021 following a personal diagnosis of hypertrophic cardiomyopathy, CardioGen Romania has grown into a key patient organisation supporting people living with genetic cardiac diseases. Driven by lived experience, the organisation provides education, community support, and advocacy, while working closely with clinicians to improve access to diagnosis and care.

Despite the devastating loss of its president in 2024, CardioGen has demonstrated remarkable resilience—continuing its mission through patient webinars, national meetings, awareness campaigns, and the distribution of patient guides across Romania. Looking ahead, CardioGen is focusing on expanding psychological support, improving the patient journey, and strengthening collaboration across Europe♥

We are pleased to welcome Adriana Planinić, an experienced research management professional with a strong background in rare diseases, to the ERN GUARD-Heart coordination team. With a PhD in Biology and extensive expertise gained at the St. Anna Children’s Cancer Research Institute in Vienna, she has been actively involved in major EU initiatives such as ERICA and EJP RD, supporting collaboration across European Reference Networks.

Adriana brings strong leadership and project coordination experience, with a focus on capacity building and education. In her new role, she will support collaboration between clinical centres, communication and dissemination, CPMS management, and knowledge exchange through educational activities♥

ERN GUARD-Heart has launched biweekly CPMS online case discussions as of May 2026, held on the first and third Mondays 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♥.

Upcoming meetings

• Monday 22 June 2026 – University Medical Center Utrecht (confirmed)
• Monday 6 July 2026 – Antwerp University Hospital (not yet confirmed)
• Monday 20 July 2026 – Umeå University Hospital (confirmed & panel opened)

On 29 May, the 1st Heart Porto Association Meeting on Sudden Cardiac Death in Cardiac Muscle Diseases brought together patients, families, and healthcare professionals for a day of learning and exchange. The event raised awareness of cardiomyopathies, prevention strategies, and the importance of early diagnosis and support networks, complemented by a hands-on Basic Life Support workshop.

👉 Read the full report and view photos here ♥

ERDERA will launch its Clinical Trial Call 2026 on 1 July 2026, supporting multinational Phase I–II clinical trials in rare diseases. The call promotes collaborative studies across countries, focusing on areas of high unmet medical need, and follows a multi-stage application process starting with a mandatory Expression of Interest.

📅 Join the information webinar on 6 July 2026 (15:00–17:00 CEST)

👉 Read full details on eligibility, scope, and application process: Call Text

ERN GUARD-Heart has successfully contributed to the European Commission’s Call for Evidence on cardiovascular health checks with the submission of a coalition document titled:
“Strengthening EU cardiovascular health checks: Integrating inherited, congenital and sudden-death-related cardiovascular risk.”

The document was submitted on behalf of the European Coalition for Inherited, Congenital and Sudden-Death-Related Cardiovascular Disease Prevention, with the support of numerous organisations, patient representatives, and experts across Europe.

This joint effort reflects the strong commitment of the ERN GUARD-Heart community and its partners to improving cardiovascular prevention strategies at EU level, with particular attention to genetic and rare cardiac conditions.

We would like to warmly thank all contributors for their rapid input, collaboration, and trust. This achievement highlights the strength of our network when clinicians, researchers, patients, and advocates unite around a shared public health goal.

🔗 More information on the European Commission Call for Evidence is available here:
https://ec.europa.eu/info/law/better-regulation/have-your-say/initiatives/17812-Cardiovascular-diseases-health-checks_en

📄 You can read the full submitted document here ♥