Ségolène Aymé MD Medical Genetics and information systems

Course and current status

Ségolène Aymé is a medical geneticist and Emeritus Director of Research at the French Institute of Health and Medical Research (INSERM). She was the founder of Orphanet in 1997 and its Executive Manager from 1997 up to 2011. Orphanet is the webportal dedicated to rare diseases and orphan drugs which is currently funded by the French Ministry of Health, the INSERM and the European Commission as a Joint Action (DG Public Health). She chairs the European Union Committee of Experts on Rare Diseases (EUCERD) and the WHO Topic Advisory Group for Rare Diseases. She serves as Editor-in-Chief of the Orphanet Journal of Rare Diseases (www.ojrd.com). She is the project leader of “Support IRDiRC”, which provides the services of a scientific secretariat to the International Rare Diseases Research Consortium (IRDiRC).

Scientific summary

Ségolène Aymé is a medical geneticist and Emeritus Director of Research at the French Institute of Health and Medical Research (INSERM). She was the founder of Orphanet in 1997 and its Executive Manager from 1997 up to 2011. Orphanet is the webportal dedicated to rare diseases and orphan drugs which is currently funded by the French Ministry of Health, the INSERM and the European Commission as a Joint Action (DG Public Health). She chairs the European Union Committee of Experts on Rare Diseases (EUCERD) and the WHO Topic Advisory Group for Rare Diseases. She serves as Editor-in-Chief of the Orphanet Journal of Rare Diseases (www.ojrd.com). She is the project leader of “Support IRDiRC”, which provides the services of a scientific secretariat to the International Rare Diseases Research Consortium (IRDiRC).

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