Position: Research Infrastructure Project Manager
Organisation: EURORDIS – Rare Diseases Europe
Area of work: Patient engagement
Member of: Community Executive Committee (CEC), Data Access Committee (DAC), Executive Management Committee (EMC), Patient Advisory Council (PAC)
Address: Plateforme Maladies Rares, 99 rue Didot
, Paris, 75014, France
Role in RD-Connect:
Virginie is a member of the Patient Advisory Council (PAC).
Virginie Bros-Facer joined EURORDIS in 2015 as Research Infrastructure Project Manager. She manages EURORDIS's participation in projects (including RD-Connect) related to infrastructures and technologies facilitating rare disease research such as patient registries, biobanks, clinical bioinformatics and next generation sequencing as well as ethical issues surrounding pre-clinical research.
She completed her MSc and a PhD in Neuroscience at King's College London and also worked at the UCL Institute of Neurology on several research projects aiming to develop new therapeutic strategies for motor neuron disease and other neuromuscular disorders. Virginie worked for several British research funding organisations, including as Director of Medical Research for Sparks, a children's medical research charity based in London.