General resources on rare diseases
The Rare Diseases Platform brings together organizations (patient and health professional), individual employees and volunteers in the private and public sectors, and stakeholders, dedicated to the field of rare diseases.
The Rare Disease Alliance offers a list of member associations active in this therapeutic area
For more information, you can consult:
The portal for rare diseases and orphan drugs Orpha.net and, in particular, the Encyclopaedia for the General Public
Rare disease education videos from the Foundation for Rare Diseases
At the European level: The EURORDIS Alliance website – Rare Diseases Europe
Disease-specific resources
- The French Scleroderma Research Group (GFRS) and, in particular, scleroderma from A to Z and frequently asked questions
- The Scleroderma Patient Association of France
- The Cochin Center for Rare Diseases
- The French Lupus and other autoimmune diseases Association (AFL +)
- The Lupus Association of France
- The Cochin Center for Rare Diseases