Who We Are

EURORDIS is a non-governmental patient-driven alliance of patient organisations and individuals active in the field of rare diseases, dedicated to improving the quality of life of all people living with rare diseases in Europe.

 

In brief

EURORDIS-Rare Diseases Europe is a unique, non-profit alliance of over 700 rare disease patient organisations from more than 60 countries that work together to improve the lives of the 30 million people living with a rare disease in Europe.

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Our Vision and Mission

EURORDIS-Rare Diseases Europe works across borders and diseases to improve the lives of people living with a rare disease

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Our Achievements

EURORDIS is widely recognised in Europe for its achievements and as a main partner working with the European Commission, the European Parliament, the Council, the European Medicines Agency, and several others.

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Representation

EURORDIS is present in several external institutions and organisations. See the list

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Activity reports, strategic approach and by-laws

The Annual Activity Report produced by EURORDIS lists and develops in detail the priority objectives and achievements of EURORDIS for the previous year.

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Staff

EURORDIS is made up of 30 people based in our Paris, Brussels and Barcelona offices.

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Board of Directors

EURORDIS' Board of Directors is composed of 12 rare disease patient organisation representatives from countries around Europe. Our members elect the Board.

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Volunteers

Learn about our volunteers: Who they are? What is their role? How do they contribute?  Find out how to become a EURORDIS Volunteer

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Contact us

EURORDIS has offices in Paris, France, Brussels, Belgium and Barcelona, Spain.

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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 multilanguage forum, RareConnect is a EURORDIS initiative RareConnect 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