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
Email: francois.houyez@eurordis.org

 
 
La voix des patients atteints de maladies rares en EuropeEURORDIS Donnant la voix, à l'international, aux personnes vivant avec une maladie rareRare Disease International Pour rapprocher patients, familles et experts sur un forum modéré multilingue, où partager leurs expériences. RareConnect Le programme Rare Barometer est une initiative d’EURORDIS qui vise à réaliser des sondages pour transformer les expériences des patients de maladie rare en faits et chiffres à communiquer aux décideurs politiques.Rare Barometer Campagne internationale de sensibilisation organisée chaque année le dernier jour de février, la Journée Internationale des Maladies Rares est une initiative d'EURORDISRare Disease Day Participez au plus grand événement réunissant tous les acteurs des maladies rares en Europe lors de Conférence européenne bisannuelle sur les maladies rares et les médicaments orphelins (European Conference on Rare Diseases and Orphan Products, ou ECRD). L'ECRD est une initiative d'EURORDISEuropean Conference on Rare Diseases