Genzyme unable to supply Fabrazyme: the European Medicines Agency recommends new guidelines for patients with Fabry disease. Read more...

Genzyme unable to supply Fabrazyme

EURORDIS President Terkel Andersen expresses concern at recent EU & Member States' decisions concerning the Rare Disease patient community
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New Blog Post from EURORDIS President

European policy on rare disease gathers momentum following the European Conference on Rare Diseases, Krakow, Poland, 13- 15 May 2010
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European Conference on Rare Diseases (ECRD)

Winning video: Garret, daily life with EB, by Andre J. Hermann. Winning photo: Twin sisters with SMA, by Ilona Brandt. Congratulations! Read more...

Photo & Video Contest Winners

Employment opportunities at Eurordis

EURORDIS is seeking a Web Content Manager, an Online Patient Communities Manager and a Communication & Fundraising Director

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European Conference on Rare Diseases – ECRD 2010 Krakow

An unprecedented number of 600 participants attended the largest ever European Conference on Rare Diseases  

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Democratizing Innovation in Rare Disease Research & Orphan Drug Development

How do patient groups foster innovation to accelerate Orphan Drug development, while ensuring the highest level of security?

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Osteogenesis Imperfecta: a mother-and-daughter experience of brittle bone disease

Osteogenesis imperfecta (OI) is a group of rare genetic disorders that mainly affect the bones.

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Patients and Researchers: Partners for Life!

EURORDIS Survey on role and priorities of patient groups in rare disease research in Europe

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EUROPLAN - Guidance for National Plans and Conferences

Key documents relating to the EUROPLAN Project, including EU Policy Documents, EUROPLAN Guidance documents and National Conference Guidance documents

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Aniridia: Living up to your dreams

Daniel Sanchez de Vega was diagnosed with Aniridia when he was one week old. His mother Rosa being affected too, the diagnosis was reached early.

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