Ségolène Aymé

Emeritus Director of Research / Founder

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Ségolène Aymé is Emeritus Director of Research at the French Institute of Health and Medical Research (INSERM). She now acts as expert in residence for rare diseases at the Brain and Spine Institute (Pitié-Salpétrière hospital) in Paris) and serves as Editor-in-Chief of the Orphanet Journal of Rare Diseases. She was the founder of Orphanet in 1997 and Executive Manager up to 2011. She chaired the EU Committee of Experts on Rare Diseases (2010 to 2013), the WHO Topic Advisory Group for Rare Diseases (2007-2016) and managed the scientific secretariat of IRDiRC (2012-2015).