Additional resources

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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

Systemic sclerosis:

• 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

Systemic lupus:

• The French Lupus and other autoimmune diseases Association (AFL +)
  
• The Lupus Association of France
• The Cochin Center for Rare Diseases

Multiple sclerosis

• The Union for the fight against Multiple Sclerosis (UNISEP)
• The French Multiple Sclerosis Association (AFSEP)
• The Association of the Paralyzed of France (APF)