François Houÿez

François Houÿez works at the European Organisation for Rare Diseases (EURORDIS).

François joined the EURORDIS team in May 2003 where he is Officer of the Health Policy department which includes Services to Patients, European Legislation and actions in the field of public health for rare diseases.

 

He represents EURORDIS at the Patients’ and Consumers’ Working Party (PCWP) at the European Medicines Agency (EMA). He is a topic leader on risk communication, and has been appointed external expert for the evaluation of marketing authorisation applications.

François pioneered patient advocacy with the EMA as part of the first patients’ delegation that engaged dialogue with the Agency in 1996.

His work has a special focus on patients’ rights advocacy. As such, he chaired the European Community Advisory Board (ECAB) and was involved in the discussions with sponsors of 77 clinical trials both at European or national levels.

From 2003 to 2004, he co-ordinated a project supported by DG SANCO, Community Action for Rare Diseases, the “Pan-European Network for Patients Information on Rare Diseases and Orphan Drugs” project (PARD III).

From 2004 to 2005 he managed the “Policy Action and Information for Rare Diseases in Europe” project (Paracelsus) and from 2006 to 2008 the “Rare Disease Patient Solidarity” project (Rapsody).

These were followed by the Patients’ Consensus on Preferred Policy Scenarii for Rare Diseases (Polka) which ended in October 2011.

Currently, he leads the EURORDIS “Drug Information, Transparency and Access” task force.

François has also worked both as a volunteer and as an employee for a variety of organisations fighting AIDS at national and international levels.

François is also a patient

www.eurordis.org

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases