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 serves as Director of Information & Access to Therapies and Health Policy Advisor.
He represents EURORDIS at the Patients’ and Consumers’ Working Party at the European Medicines Agency (EMA) and in ACT EU (Accelerating Clinical Trials in the EU). He also represents EURORDIS in the Health Technology Assessment Network.
François oversees EURORDIS’s Community Advisory Boards (EuroCAB) programme.
He pioneered patient advocacy with the European Medicines Agency as part of the first patient delegation that engaged in dialogue with the Agency in 1996. He has been continuously involved in the EMA’s activities for the past 29 years.
François compiles trend information and regularly assists rare disease patients facing issues with access to treatments, including marketing authorisations, health technology assessment, pricing and reimbursement, compassionate use, shortages, and pharmacovigilance.
He also serves as General Secretary of the GetReal Institute on Real-World Data.
François is also a patient.
Telephone: +33 1 56 53 52 18
Email: francois.houyez@eurordis.org