Genzyme unable to supply Fabrazyme: the European Medicines Agency recommends new guidelines for patients with Fabry disease. Read more...
EURORDIS President Terkel Andersen expresses concern at recent EU & Member States' decisions concerning the Rare Disease patient community
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European policy on rare disease gathers momentum following the European Conference on Rare Diseases, Krakow, Poland, 13- 15 May 2010
Read more... Presentations now available
Winning video: Garret, daily life with EB, by Andre J. Hermann. Winning photo: Twin sisters with SMA, by Ilona Brandt. Congratulations! Read more...
Employment opportunities at Eurordis
EURORDIS is seeking a Web Content Manager, an Online Patient Communities Manager and a Communication & Fundraising Director
European Conference on Rare Diseases – ECRD 2010 Krakow
An unprecedented number of 600 participants attended the largest ever European Conference on Rare Diseases
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?
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.
Patients and Researchers: Partners for Life!
EURORDIS Survey on role and priorities of patient groups in rare disease research in Europe
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
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.
