Director of Research at INSERM
Ségolène Aymé is a medical geneticist, Director of research at the French Institute of Health and Medical Research (INSERM). She is the executive manager of the INSERM department dedicated to information on rare diseases in Paris. This service established Orphanet (www.orpha.net) in 1997, the European database of rare diseases and orphan drugs which 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 and Consumer Protection. She now chairs the newly formed European Union Committee of Experts on Rare Diseases (EUCERD). She is also 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.