- About EURORDIS
- About Rare Diseases
- Rare Disease Policy
- Orphan Drugs & Treatments
- What is an orphan drug?
- Improve the safety of your medicines
- Compassionate Use
- Role of EURORDIS
- Patient advocates involvement
- Access to orphan drugs
- Health technology assessment
- EURORDIS Round Table of Companies (ERTC)
- List of the latest marketing authorisations and orphan medicinal products designations
- Living with a Rare Disease
- Services & Trainings
- Get involved
- News & Events
Virginie Bros-Facer
- Scientific Director
Virginie joined EURORDIS in 2015 as Research Infrastructure Project Manager, later becoming Scientific Director. Her responsibilities include managing all EURORDIS activities 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 this pre-clinical research.
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 motor neuron disease and other neuromuscular disorders.
Virginie has a niece with a rare form of CDG syndrome and has recently moved back to France after spending 16 years in the UK.
Virginie speaks French and English.
Find out the latest news from the rare disease community! We comply with the HONcode standard for health trustworthy information
We are grateful for the financial support of the EURORDIS website by:
This website received funding under an operating grant from the European Union’s Health Programme (2014-2020)
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