User: Segolene Ayme

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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, called Orphanet (www.orpha.net), was established in 1997 as the European database of rare diseases and orphan drugs and 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 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.