INSERM US14 – Orphanet

Founded in 1964, the French National Institute of Health and Medical Research (Inserm) is a public scientific and technological institute which operates under the joint authority of the French Ministry of Health and French Ministry of Research.  In 1997, INSERM Unit 14 established Orphanet, the reference portal of rare diseases and orphan drugs. It also hosts the scientific secretariat of the EU Committee of Experts in the field of Rare Diseases and the secretariat of the World Health Organisation’s Topic Advisory Group on rare diseases.

Orphanet aims to help improve the diagnosis, care and treatment of patients with rare diseases, and to provide information on developments in research and new therapies. It offers a large range of freely accessible services via its multilingual website,