Links, News and Events about Rare Diseases in general
Eurordis Rare Diseases Europe - The Voice of Rare Disease Patients in Europe
EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 561 rare disease patient organisations in 51 countries covering over 4000 diseases.
The portal for rare diseases and orphan drugs
Orphanet is a reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.
Foundation for children suffering from rare diseases
The Care-for-Rare foundation was founded so that children suffering from rare diseases can gain quicker access to modern genetic diagnoses and innovative therapeutic methods.
Newsletters
Eurordis Newsletter:
The Eurordis newsletter is published monthly in 6 languages and contains articles, news and events.
You can subscribe for the newsletter on the following webpage:
Goto Eurordis webpage
OrphaNews Europe:
OrphaNews Europe is the bi-monthly electronic newsletter of the European Union Committee of Experts on Rare Diseases.
Subscribe for OrphaNews