Ségolène Aymé is a medical geneticist and Director of Research at the INSERM (French Medical Research Institute). 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.
In this interview she speaks about her experience with patients and patient organisation in furthering research into rare diseases and the role in which patients can act as drivers of collaboration between researchers and act as catalysts for new research projects.
