Advocacy with tools and programs to promote access to information, research and services for patients and families affected by genetic diseases.
Join as a free member and find resources on your disorder, how many members are registered with the same disorder, and subscribe to newsletters.
A rare disease database that provides information on genes or conditions. On each specific rare disease page, there are links to patient organizations and expert medical centers noted for that specific disease.
Rare Diseases International
[Geneva, Switzerland] Rare Diseases International is a global alliance of individuals living with any rare disease. It aims to bring together national and regional rare disease patient organizations and create a strong common voice to advocate for rare disease as an international public health priority.