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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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Rare Disease Day 2023 Learn more EURORDIS Membership Meeting (EMM) 2023 Learn more EURORDIS Ukraine Response More information Rare on Air
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Latest News

NewsRevisions for the better: How Europe should boost the development of rare disease medicinesThe European Commission will very shortly be releasing their proposed legislative revisions to the Orphan Medicinal Products (OMP) Regulation, which...Date: March 17, 2023
Press releaseAward to EURORDIS-Rare Diseases Europe for driving a European Action Plan on rare diseasesEURORDIS awarded for its work by FEDER, the Spanish National Alliance for Rare Diseases.Date: March 16, 2023
CommunityEnora’s Story: CASK-related disordersHearing directly from patients is an essential aspect of understanding the reality of living with a rare disease. Patient testimonies...Date: March 9, 2023
Press releaseEURORDIS and partners launch major project to empower patient involvement in Health Technology AssessmentsEURORDIS-Rare Diseases Europe launches European Capacity Building for Patients (EUCAPA) project.Date: March 7, 2023
Press releaseEURORDIS expresses its support for an ECHR case involving cross-border healthcare for a child with a rare diseaseParis, 28 February 2023 – EURORDIS-Rare Diseases Europe, a non-governmental patient-driven alliance of patient organisations representing more than 1000 rare...Date: February 28, 2023
Press releaseMEPs call on Commission President to deliver overdue strategy on rare diseasesMEPs write to European Commission President Ursula von der Leyen on Rare Disease Day.Date: February 27, 2023
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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

EURORDIS has received funding under an operating grant from the European Union’s Health Programme (2021-2027) for this website. 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.