News (138)
RSSERN PaedCan's Patient Advocates video
Booklet now available in 17 linguistic versions - European Reference Networks: A success story for patients living with a rare disease
2026 call for applications
Summary report - Patients’ rights on cross-border healthcare and the European Reference Networks (26 March 2026)
European Reference Networks: updated individual factsheets
European Reference Networks - Working for patients with rare, low-prevalence and complex diseases (2026 edition)
Understanding Epilepsy and EpiCARE: a comprehensive overview
Let’s meet an ERN-EYE patient advocate with a clear vision of the future!
Let’s meet a cross-border health success story - a young woman who is now advocates for the ERN RARE LIVER
European Reference Networks: First monitoring report published
Video clip - Meet the European Patient Advocacy Group representative from the European Reference Network on rare kidney diseases, ERKNet
Video clip - Dravet Syndrome patient advocate takes a broader view as a Patient Advocacy Group representative in the ERN on rare and complex epilepsies, ERN EpiCARE
Updated overview table - ERNs Working Groups
Decision of 25 June 2025 - Evaluation of the European Reference Networks for Rare Diseases
Minutes - Board of Member States on ERNs – Extraordinary meeting (25 June 2025)
Working Groups
Videos - Patient Journeys on Hereditary Spastic Paraplegias (HSPs)
Minutes - Board of Member States on ERNs – Extraordinary meeting (10 June 2025)
Minutes - Meeting of the ERN Board of Member States and ERN coordinators (Rome, 22 May 2025)
Factsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)