Orphanet www.orpha.net, a unit of the French Institute of Health and Medical Research (INSERM) was created in 1997 by Segolène Aymé, in order to establish a database of rare diseases and orphan drugs.
Orphanet is the tool of excellence which has enabled patients over the years to find their way, and patient organisations to be heard, known and recognised in their work. It has become the reference portal for rare diseases and orphan drugs: translated into 5 languages, it provides expert validated and essential information to patients, their families and all health professionals.
Segolène Aymé has succeeded in rising to this challenge on behalf of the rare disease community, and has successfully established much-needed European and international networks in the fields of basic, clinical and therapeutic research relevant to rare diseases. Driven by her enormous reserves of willpower and energy, which are only surpassed by her generosity and humanity, Ségolène Aymé is constantly expanding the scope of her work and partnerships in order to combat the serious and painful public health issue of rare diseases.

Ségolène Aymé is a medical geneticist and Director of Research at the INSERM. She is the executive manager of Orphanet. This service is currently funded by the French Ministry of Health, the INSERM and the European Commission (DG Public Health and DG Research). Since 2004, she has served as the leader of the Rare Diseases Task Force established by the European Commission, DG Public Health. She is also the Liaison Officer of the European Society of Human Genetics for International affairs, the Editor-in-Chief of the Orphanet Journal of Rare Diseases (www.ojrd.com) and the Chair of the WHO Topical Advisory Group for Rare Diseases.