Orphanet

Orphanet is a web portal for rare diseases and orphan drugs.

Orphanet was established in France in 1997 at the advent of the internet in order to gather scarce knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. This initiative became a European endeavour from 2000, supported by grants from the European Commission: Orphanet has gradually grown to a Consortium of 40 countries, within Europe and across the globe.

Over the past 20 years, Orphanet has become the reference source of information on rare diseases. As such, Orphanet is committed to meeting new challenges arise from a rapidly evolving political, scientific, and informatics landscape. In particular, it is crucial to help all audiences access quality information amongst the plethora of information available online, to provide the means to identify rare disease patients and to contribute to generating knowledge by producing massive, computable, re-usable scientific data.