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Eurordis - Rare Disease Europe

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

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Latest News & Events

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...
Demystifying HTA: patients’ role in new legislationEarlier this year, the EU Regulation on Health Technology Assessment (HTA) – a deliverable of the EU Pharmaceutical Strategy – entered into...
ECRD and the road to equity: In conversation with patient advocate Rebecca SkarbergAhead of the 11th European Conference on Rare Diseases and Orphan Products on 27 June – 1 July, we asked Rebecca Skarberg,...
ECRD 2022: Solving the complex challenges faced by people living with a rare disease in EuropeFrom 27 June to 1 July, join us at the 11th edition of the European Conference on Rare Diseases and...
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74 countries View more

77 European federations of specific rare diseases View more

56 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

56 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