François Houÿez

  • Information & Access to Therapies Director & Health Policy Advisor

François Houÿez has worked as a patient advocate since the early 1990s  (HIV/AIDS, Act Up -Paris and EATG) and joined EURORDIS in May 2003. He now works as Information & Access to Therapies Director & Health Policy Advisor.

He represents EURORDIS at the Patients’ and Consumers’ Working Party at the European Medicines Agency (EMA). He also represents EURORDIS at the Health Technology Assessment Network, and in CIOMS Working Group XI on Patient Involvement in the Development and Safe Use of Medicines.

François supervises EURORDIS's programme for Community Advisory Boards (EuroCAB) and the European Network of Rare Diseases Help Lines.

He pioneered patient advocacy with the European Medicines Agency as part of the first patients’ delegation that engaged dialogue with the Agency back in 1996 and has continuously been involved in the agency activities during the last 26 years.

François compiles trend information, and regularly fields questions from rare disease patients having issues with access to treatments (especially marketing authorisations, health technology assessment/pricing/reimbursement, compassionate use, shortages, and pharmacovigilance) and please feel free to contact him about these topics.

François is also a patient.

Telephone: +33 1 56 53 52 18

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect 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.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day 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 initiativeEuropean Conference on Rare Diseases