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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

NewsRare diseases through the lens of social mediaWho lights up your feed? Who brings the voice of your family on social media? Now, it is your chance...
NewsEURORDIS Black Pearl Awards 2023: Education and Collaboration as the cornerstone of changeBoth this year’s Leadership and Volunteer award winners have demonstrated dedication to improving the lives of people in the rare...
Press releasesEURORDIS-Rare Diseases Europe partners with EveryLife Foundation to support Brussels Rare Disease Week 202323 January, Paris – EURORDIS-Rare Diseases Europe is proud to announce a partnership with the EveryLife Foundation for Rare Diseases...
News2023 Black Pearl Awards: Celebrating another year of action and advances for the rare disease communityOur next Black Pearl Awards, taking place on 21 February, will celebrate the work of extraordinary people.
NewsEURORDIS Black Pearl Awards 2023: The power of putting patients’ interests at the heart of researchDr Botella is a molecular biologist and geneticist, currently researching at the National Research Council of Spain (CSIC). She first...
Press releasesPro Rare Austria and Salzburg University of Education collaboration becomes a cornerstone of the global 2023 Rare Disease Day campaign13 January 2023, Paris – A joint project between the Pädagogische Hochschule Salzburg and Pro-Rare Austria, the Austrian national alliance...
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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