Other Quality Rare Disease Resources

A list of websites and online communities for many rare diseases. If you would like us to consider adding your link to the list, please contact us

Written by RareConnect team, published about 1 year ago.


Cancer Commons aims to provide patients and their physicians with the knowledge needed to select the best available therapies and trials, and to continuously update that knowledge based on each patient’s response.


Chinese Organization for Rare Disorders is the largest nonprofit organization for rare diseases in China, representing more than 45 rare disease patient organizations and more than 25,000 patients. 

 DuchenneConnect is a patient-report registry and educational resource for individuals with Duchenne and Becker muscular dystrophy, carrier females, and families of affected individuals.



EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 646 rare disease patient organisations in 60 countries covering over 4000 diseases.

FEDER is the voice of 3 million people living wirth rare diseases in Spain and is the National Alliance for Rare Diseases in Spain.


Guía Metabólica contains interactive information on 58 of Inborn Errors of Metabolism along with the opportunity to ask specialists questions. In Spanish language. 



  Le Forum Des Maladies Rares was created by Rare Diseases Information Services in France and is open to people involved, directly or indirectly, by rare conditions, especially patients, their families and their loved ones. In French language. 



Marshall Smith Syndrome Family Circle was created by the MSS Research Foundation to organize contact with fellow sufferers, initiatiate medical research and work on standards of care.



Orphanet is the reference portal for information on rare diseases and orphan drugs.

Written by RareConnect team, published about 1 year ago.

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