Orphanet – A Portal For Rare Diseases

Segolène Ayme, Director, Orphanet | EU

Ségolène is a medical geneticist, epidemiologist, and director of research at INSErM (National Institute of health and Medical research) in Paris. Her research concerns the Public health impact of technology on human genetics. Ségolène is a member of both the National rare Disease Plan steering committee and the rare Disease task Force at the European Commission. Beyond all that, Ségolène is a true internet pioneer having founded orphaNet, the rare disease portal even the WHO relies upon for disease classification. OrphaNet offers search, content, clinical trial recruiting services, consultation information, all in multiple languages.