Recommendations to achieve a mature ERN system in 2030

December 2020

Our vision is for a mature European Reference Network (ERN) system that leaves no person living with a rare disease in uncertainty regarding their diagnosis, care and treatment.

The “Recommendations to achieve a mature ERN system by 2030” have been developed by EURORDIS, our member organisations and ERN ePAG patient advocates. EURORDIS has played a critical role in amplifying the patient voice and creating the conditions for engagement within ERNs so that their activities remain driven by patients’ needs.

The paper, and the accompanying Policy Brief, reviews progress achieved so far and presents our vision of a mature ERN system. It calls for patient organisations and experts to unify within the Networks, and for ERNs to be embedded within healthcare systems across the European Union.

Read the full paper

Read the policy brief


The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative 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