The European Commission has announced its decision on the appointment of the members of the European Union Committee of Experts on Rare Diseases Read more...
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
Noonan Syndrome Angels: An Italian patient organisation is fighting for them
A child may be affected by Noonan syndrome in various ways: unusual facial characteristics, short stature, heart defects
Employment opportunities at Eurordis
EURORDIS is seeking a Communication & Fundraising Director and an Administrative and Accounting Manager
Patients and Researchers: Partners for Life!
EURORDIS Survey on role and priorities of patient groups in rare disease research in Europe
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.
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
