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

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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