France takes stock of its rare disease plan and pledges to promote European cooperation during upcoming EU presidency
France’s Minister of Health, Roselyne Bachelot-Narquin, last week presented a discourse on the occasion of the third reunion of the committee responsible for evaluating the country’s rare disease plan which was launched in 2005 for a four-year period. France was the first European country to implement a rare disease plan, which has been widely used as a model by other countries. Minister Bachelot-Narquin evoked various elements of the plan that have been successfully undertaken, including the designation of 132 centres of reference to date encompassing 17 different categories of rare diseases that allow for the development of specialised expertise for these diseases; improved diagnostics, particularly in the domain of molecular biology; the elaboration of quality information disseminated freely to patients and professionals – notably via Orphanet, the European portal for rare diseases; and research – under the French rare disease plan over 70 projects have been financed at the cost of 26 million euros. The ten principal elements of the plan are now being reviewed in order to determine those that have met their objectives and those that need continued support. The Health Minister, underscoring her support for the provisions of the European Commission's Communication on European Action in the Field of Rare Diseases, emphasised the need for European-level collaboration in the field of rare disease and orphan drugs and reiterated the priority France would give to this issue when it assumes the EU presidency in July. Read the speech of the Health Minister (in French).