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Eurordis - Rare Disease Europe

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We empower, partner, and advocate for people living with a rare disease in Europe

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Latest News

Press releaseThe global rare disease community calls on United Nations Member States to turn Universal Health Coverage into a reality for people living with rare diseases21 September 2023, New York – Today, at the United Nations Headquarters, Rare Diseases International (RDI) in partnership with EURORDIS-Rare Diseases Europe, ...Date: September 21, 2023
NewsInterview with Yann Le Cam: Reflecting on a Quarter Century as Chief Executive OfficerWe speak to Yann about what strategic approaches have been central to EURORDIS’ success, the ways that the organisation has...Date: September 20, 2023
CommunityLiving Life to the Full – Life with Kearns Sayre syndromeRead Victor's inspiring story of resilience. Through motivation and a positive outlook he remains determined to experience life despite the...Date: September 15, 2023
NewsCall for applications: Open Academy Schools 2024Since 2008, EURORDIS has offered multiple programmes and courses to patient advocates, empowering not only our member organisations and volunteers,...Date: September 14, 2023
Press releaseYann Le Cam announces departure as Chief Executive Officer of EURORDIS-Rare Diseases Europe13 September 2023, Paris – Yann Le Cam, who has served as Chief Executive Officer of EURORDIS – Rare Diseases Europe for the past...Date: September 13, 2023
Press releaseEURORDIS: Commission’s Disability Card plans are promising, but implementation will be keyRaquel Castro, EURORDIS Social Policy and Initiatives Director, responds to European Commission plans for the EU Disability Card.Date: September 6, 2023
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74 countries View more

77 European federations of specific rare diseases View more

57 National alliances of rare disease patient organisations View more

1,000 +member patient organisations View more

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Outreach to over2,500patient groups View more

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over 400volunteers View more

Map of europe

74 countries

77 European federations of specific rare diseases

57 National alliances of rare disease patient organisations

1,000 +member patient organisations

Outreach to over2,500patient groups

over 400volunteers

Join a thriving community of over 1000 patient organisations

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EURORDIS has received funding for this website under an operating grant from the European Union’s Health Programme (2021-2027) and from the AFM-Téléthon and corporate donors. Views and opinions expressed on this website are however those of the author(s) only and do not necessarily reflect those of the European Union or HaDEA. Neither the European Union nor the granting authority can be held responsible for them.