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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

The Momentum Builds: European Economic and Social Committee calls for an action plan on rare diseases“Having heard evidence from people right across the patient community and civil society, we learned that there is huge, unrealised...
Another Step Closer: Why Europe should keep striving toward an Action Plan for Rare DiseasesOn 25-26 October, the Czech government will host a milestone conference that should take us one step closer to the delivery of...
Involving those who matter most: Improving patient engagement in the development of medicinesFrom launching applications to next year’s Open Academy Schools, to supporting the new, EU-funded REMEDi4ALL project on medicines repurposing, we...
Open letter: ECRD partner organisations call on the European Commission for a new European strategy on rare diseasesEURORDIS, alongside 57 partner organisations of the European Conference on Rare Diseases and Orphan Products 2022, co-signed a letter to...
Celebrating our rare disease stars: an interview with young patient advocate Danielle DrachmannEach year, the EURORDIS Black Pearl Awards recognise the outstanding efforts of individuals, organisations and companies who dedicate their lives...
Building the future of a rare disease ecosystem: In conversation with Professor Hans-Georg EichlerWith the 11th European Conference on Rare Diseases and Orphan Products just around the corner, we asked Professor Hans-Georg Eichler — consultant...
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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