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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

Latest News & Events

More Than You Can Imagine: A recap of our conference at the European ParliamentOur Rare Disease Day event at the European Parliament demonstrated the impact of living with rare diseases and the value...
European Health Data Space: Adoption Complete, All Eyes on ExecutionWe highlight the adoption of the EHDS and its potential to transform rare disease healthcare and research.
Rare Disease Day 2025 – You Can Do More Than You Can Imagine!On 28 February, the world will unite for the 18th edition of Rare Disease Day! How can you get involved?
A recap of the conference in Budapest: ‘For an EU Commitment to Tackling Rare Diseases’A summary of the conference held by the European Economic and Social Committee in November 2024.
EURORDIS-Rare Diseases Europe in 2025EURORDIS Chief Executive Officer Virginie Bros Facer reflects on the achievements of 2024 and shares her vision for 2025.
Health Technology Assessments in 2025: What changes are coming?We explore key changes coming with the EU HTA Regulation and what they mean for rare disease patients.
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74 countries View more

80 European federations of specific rare diseases View more

55 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

80 European federations of specific rare diseases

55 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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