European Reference Networks - Latest updates

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)

Booklet - European Reference Networks. A success story for patients living with a rare disease

Factsheet - How the European Commission works on Rare Diseases and the European Reference Networks (ERNs)

Factsheet - EU delivering on rare diseases for patients and families

Commission launches new platform for cross-border medical discussions on rare diseases

Video recording - EUHPP Live Webinar: European Reference Network evaluation: the way forward (4 December 2024)

ERNs evaluation results report - Independent Evaluations of European Reference Networks and of Healthcare Providers

Agenda and registration - EUHPP Live Webinar: European Reference Network evaluation: the way forward (4 December 2024, 10.00-11.15 CET)