Aporte a la rutina de la trinchera asistencial donde los conocimientos se funden con las demandas de los pacientes, sus necesidades y las esperanzas de permanecer en la gracia de la SALUD.
jueves, 1 de abril de 2010
Patients Advancing Rare Disease Research. Interview with Segolène Aymé founder of Orpha.net
About Ségolène Aymé
Ségolène Aymé is a medical geneticist and Director of Research at the INSERM. 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.
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