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Virginie Bros-Facer

Chief Executive Officer

Virginie Bros-Facer

Virginie returned to EURORDIS-Rare Diseases Europe in March 2024 to take on the role of Chief Executive Officer, after having previously served as the organisation’s Scientific Director.

Virginie received her PhD in Neurosciences from King’s College London, UK followed by several postdoctoral research projects at the Institute of Neurology, UCL, London focused on testing therapeutic strategies for Amyotrophic Lateral Sclerosis. After leaving the lab, she worked for several research funding organisations in the UK including the National Institute for Health Research, the Medical Research Council and as Medical Director for Sparks, a medical research charity focusing on rare paediatric diseases.

Upon subsequently joining EURORDIS as Scientific Director, she took the lead on project development and patient engagement in rare disease research projects representing the voice of rare disease patients, including within the International Rare Disease Research Consortium (IRDiRC). Virginie led in the creation of the EURORDIS Winter School on Scientific Innovation and translational research, aimed at empowering people living with a rare disease to fight for their rights to a better and healthier future.

In January 2022, Virginie joined Illumina as Associate Director for Medical Affairs, Europe, where she engaged key opinion leaders and centres of excellence to develop clinical evidence for genetic testing of rare and undiagnosed patients to drive clinical adoption of next-generation sequencing and implementation in patient care.

Until joining EURORDIS, Virginie had been a member of the Diagnostic Scientific Committee of the International Rare Diseases Research Consortium (IRDiRC), which coordinates a dedicated working group on real-world applications and technologies for newborn screening.