Current Environment:

Rare Disease Resources | Overview


Genetic Alliance

An online network of genetic professionals and patients focused on promoting informational resources and patient advocacy. The site contains many "patient friendly" resources.


National Institutes of Health (NIH) Office of Rare Diseases

A government-run organization dedicated to rare diseases. The website aims to answer questions about rare diseases and contains useful information about patient advocacy groups and ongoing research trials.


National Organization for Rare Disorders (NORD)

An umbrella organization that brings together smaller foundations focused on orphan diseases. The site contains excellent informational resources on rare disorders and patient support groups.


European database with information on rare diseases and orphan drugs. Text is available in English, Dutch, French, Italian, and Spanish.