Centres of Expertise & European Reference Networks for Rare Diseases

In 2008, EURORDIS adopted this Declaration of “Common Principles on Centres of Expertise and European Reference Networks for Rare Diseases”, in order to improve patient care throughout Europe.

Rare disease patients call upon National Health Authorities to endorse, publicise and implement the following Declaration to contribute to the identification of Centres of Expertise and to support them financially.


Length: 4 pages

Languages: English, French, German, Italian & Spanish

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