France prepares its Third National Plan for Rare Diseases
The second French National Plan for Rare diseases 2011-2014 was extended by two years until the end of 2016 to allow in particular its evaluation by two external bodies: HCSP- Haut Comité de la Santé Publique (HCSP) and the HCERES- Haut Conseil de l’Evaluation de la Recherche et de l’Enseignement Supérieur (HCERES). After the publication of the reports, the announcement was made by the French Minister of Social Affairs and Health, Marisol Touraine, of the decision to launch a third plan (Read in OrphaNews France).
Two personalities were mandated by both the Ministry of Social Affairs and Health and the Ministry of Higher Education and Research to prepare the roadmap for this 3rd Plan: Prof. Sylvie Odent, geneticist and coordinator of a centre of expertise for rare diseases at Rennes University Hospital, and Prof. Yves Lévy, President of the Research Alliance Aviesan and CEO of INSERM in order to comply with health and research attachments of rare diseases.
Prof Sylvie Odent is a pediatrician and geneticist, professor of genetics at the University of Rennes and chief of the Medical Genetics Service of the Rennes University Hospital. She is the coordinator of the rare disease reference centre for developmental anomalies and malformation syndromes, and the president of the Francophone association of clinical geneticists (AFGC). Prof. Yves Lévy is a specialist in immunology, a physician who is also a researcher and academic. He has worked successively in several INSERM research units since 1999. He was the Vice-Dean of the Faculty of Medicine, Paris-Est Créteil University (UPEC). He subsequently became a special advisor to the Minister for Higher Education and Research. He has been the CEO of INSERM since 2014.
Prof. Lévy and Prof. Odent, together with ministries of health and research representatives, presented the preparatory work on 14th October at a multi-stakeholder committee. This committee has also been assigned with the follow up of the preparation process.
Representatives from patient organisations, the healthcare sector, research organisations, national insurance body, industry and information, including Orphanet, as well as the respective ministries representatives discussed on the main themes to be further developed by ad-hoc working groups. A steering committee will be constituted in the coming days to ensure the overall coherence and integration of the recommendations made by working groups.
With this Third Plan, France aims to build on the lessons learned from the previous ones, to consolidate their achievements, but also to go further towards a better integration between health and research, between healthcare and social care, and with European and international policies and initiatives, in order to promote equity to access to diagnosis, global care and innovation for patients.