Dr Segolene Ayme | Founder of Orphanet & Rare Disease Expert in Residence

Dr Segolene Ayme, Founder of Orphanet & Rare Disease Expert in Residence, Inserm

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 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 International Rare Disease Research Consortium (2012-1015).


Day 1, Nov 7 @ 08:35

European Reference Networks (ERNs) – What are they expected to deliver?

  • Why ERNs were established, how do they work and what kinds of ERNs are already in place for rare diseases?
  • Creating a clear governance structure for knowledge sharing and coordination across the EU to improve access to diagnosis, treatment and care
  • What resources do ERNs have to reach their goals, at a European and Member State level
last published: 17/Oct/18 12:05 GMT

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