Membership of EURORDIS

EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 812 rare disease patient organisations in 70 countries.EURORDIS works to build a strong pan-European community of patient organisations and people living with rare diseases

 


 

EURORDIS' members around the world

EURORDIS' members around the world

 

 

Members’ news and announcements

Find out what's on and where!

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Become a member

As a member of EURORDIS, you will join an active pan-European rare disease community of dedicated people facing similar issues.

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EURORDIS Membership Meeting

Each year, EURORDIS holds a general assembly attended by close to 200 of its member organisations. These events are always excellent networking opportunities for patients to meet other patient advocates from around the world.

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National Alliances for Rare Diseases

National Alliances federate patient organisations from a wide range of diseases within their particular country.

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European Rare Disease Federations

European Rare Disease Federations serve to bring together national patient organisations for a specific rare disease.

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Learning from each other

Learn from the experience of other patient organisations across the world.

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EURORDIS Community Advisory Board (CAB) Programme

Patient Community Advisory Boards (CABs) are groups established by patient advocates to discuss the latest developments, challenges and issues related to medical research in their disease area.

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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 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