Orphanet: The Portal for Rare Diseases and Orphan Drugs

Orphanet is a self‐described “portal for rare diseases and orphan drugs”, with the stated purposes of improving the quality of medical care for rare diseases and providing adapted services for the rare disease community. Published by INSERM, a French health agency, Orphanet began as a French effort in 1997 and became a European project in 2000. The web site lists over 5,000 rare diseases in its Orphanet Encyclopaedia, and provides searchable access to over 750 drugs and diagnostic or therapeutic substances in its database. It also collects organization, clinic and medical specialist information from 38 European countries. The site can...