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Latest News

NewsEURORDIS-Rare Diseases Europe in 2025EURORDIS Chief Executive Officer Virginie Bros Facer reflects on the achievements of 2024 and shares her vision for 2025.Date: January 14, 2025
NewsHealth 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.Date: December 10, 2024
CommunityOvercoming Stigma: Kate Tyler on life with congenital anomalies and finding self-acceptanceKate Tyler reveals the physical, emotional, and social challenges of living with congenital anomalies, and the importance of feeling accepted.Date: December 10, 2024
Press releaseEU conference prepares for comprehensive European action on rare diseasesEURORDIS welcomes the culmination of the EESC conference’s calls for a European Action Plan for Rare Diseases by 2030.Date: November 29, 2024
Press releaseEURORDIS welcomes the milestone 5-year evaluations of the European Reference NetworksEURORDIS celebrates 92% of the European Reference Networks being rated as “Excellent” or “Very Good” in achieving their objectives.Date: November 29, 2024
Press releaseEURORDIS congratulates new European Commissioners on their confirmationEURORDIS responds to the European Parliament voting to confirm the new European Commissioners.Date: November 27, 2024
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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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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.