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Virginie Bros-Facer
- Scientific Director
Virginie joined EURORDIS in 2015 as Research Infrastructure Project Manager, later becoming Scientific Director. Her responsibilities include project development and patient engagement in rare disease research projects. She oversees EURORDIS operational activities related to infrastructures and technologies facilitating rare disease research such as bioinformatics, genetics and genomics to improve diagnosis and understanding of rare diseases.
Prior to joining EURORDIS, Virginie worked for several research funding organisations in the UK, including as Director of Medical Research for Sparks, a children's medical research charity based in London.
Virginie holds an MSc and a PhD in Neuroscience from King's College London and also worked at the UCL Institute of Neurology on several research projects aiming to develop new therapeutic strategies for amyotrophic lateral sclerosis and other neuromuscular disorders.
Virginie has a niece with a rare form of CDG syndrome, CDG-ALG11.
Virginie speaks French and English and is learning Spanish.
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The voice of rare disease patients in Europe
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative
The international voice of people living with rare diseases
Bringing together patients, families and experts to share experiences in a moderated multi-language forum.
The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.
An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiative
Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiative