Where to find information?
Maladies rares Info Service
Maladies Rares Info Services responds by telephone, e-mail and chat to questions from people affected by one of the seven thousand rare diseases.
A clear response adapted to the person's situation is given to each request.
Orphanet is the reference information portal on rare diseases and orphan drugs, for all audiences.
Patients organizations

L'Alliance Maladies Rares
The Alliance is a group of nearly 300 associations dedicated to rare diseases