European Reference Networks (ERNs) for rare diseases

European Reference Networks for rare diseases create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders.

EURORDIS' work on European Reference Networks focuses on disease and geographic coverage of ERNs, clinical excellence, patient engagemnet in ERNs and improving patient health outcomes.  


About ERNs

Important information on ERNs and EURORDIS' role in their development


ERN guide for patient advocates

Everything you need to know about ERNs in one place!


Join the European Patient Advocacy Groups (ePAGs)

Patient organisations and representatives can join the ePAGs, which are designed to ensure active participation of patients in the ERNs.


News on ERNs

Read the latest EURORDIS eNews articles on ERNs


EURORDIS member webinars on ERNs

Watch EURORDIS member webinars on ERNs and see how ERNs have been the focus of EURORDIS events

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases