ICPerMed conference


Ségolène Aymé

Health Data Hub


Ségolène Aymé is currently President of the Scientific Advisory Board of the Health Data Hub. She is a medical geneticist and epidemiologist, Director of Research Emeritus at INSERM. She is the founder of ORPHANET (www.orphanet.fr). She has held numerous national and international positions in the field of genetic diseases and rare diseases and is now putting this experience at the service of the Institut du Cerveau in Paris, as part of her emeritus position. In the field of genetics, she has chaired the French Society of Human Genetics, the European Society of Human Genetics and the International Federation of Human Genetic Societies. In the field of epidemiology, she chaired the Registry Evaluation Committee, and was the coordinator of the European network of malformation registries EUROCAT. In the field of rare diseases, she chaired the European Union Rare Diseases Committee and the WHO Rare Diseases Advisory Committee, and was the Scientific Secretary of the International Rare Diseases Research Consortium IRDiRC. In the field of ethics, she created and chaired for ten years the European Society of Human Genetics' ethical reflection body. She was a member of the INSERM ethics committee and now chairs the ethics committee of the Paris Brain Institute.