European Reference Networks for Rare Diseases

Rare disease patients have been officially involved in the reflection process on Centres of Expertise (CE) for Rare Diseases (RDs) and on European Reference Networks (ERNs) of Centres of Expertise since the beginning of the discussions at EU level. Without repeating what has already been said in different fora, EURORDIS wishes to contribute to the debate currently going on at both national and European levels aimed at elaborating and establishing an optimal, sustainable system of ERNs throughout the European Union. Through this Position Paper, EURORDIS wishes to underline the main elements from the rare disease patients’ perspective for the implementation phase of the strategic policy and framework that has been developed in recent years.

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