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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

Press releaseRare Barometer launches new survey on newborn screening31 May 2023, Paris – Rare Barometer, a EURORDIS – Rare Diseases Europe global survey initiative, has launched a new...Date: May 31, 2023
NewsNo one left behind, no needs left unmet: Uniting at #EMM2023 for lifelong, holistic careWe explore the themes of discussions at #EMM2023 and the need for a holistic approach to rare diseases.Date: May 30, 2023
NewsMental Wellbeing in the Rare Disease Community: An interview with ALAN – Maladies Rares LuxembourgIn an interview with Daniel Theisen, Director of ALAN - Maladies Rares Luxembourg, we discuss what his organisation has been...Date: May 28, 2023
Press releaseEURORDIS joins European Disability Forum in calling on EU institutions to build an inclusive future for persons with disabilities EURORDIS supports the European Disability Forum's Manifesto ahead of 2024 European Elections.Date: May 24, 2023
Staff BlogValuing Mental Wellbeing in the Rare Disease CommunityIt is time for the rare disease community to stop dealing with these challenges alone and come together to talk...Date: May 22, 2023
NewsA lifelong, holistic approach to rare diseasesWe look at each of the workshops at #EMM2023 relating to different life stages, and spotlight our inspiring speakers.Date: May 9, 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.