France reviews its rare disease plan and extends patronage to rare disease activities under upcoming EU presidency
The follow-up committee for the French National Rare Disease Plan (2005-2008) has issued a set of conclusions and actions following a series of meetings taking stock of the plan. France was the first European country to implement a rare disease plan, which has since been taken as a model by other countries. The meetings served to review some of the mechanisms the rare disease plan established for rare disease research and care. These include concrete policies assuring the reimbursement of medical care and products for rare diseases. Non-medicinal products for rare disease patients, including special hydrating creams, nutritional supplements and equipment, are now reimbursed, along with certain off-label medicines used in the treatment of rare diseases. In addition, a special rare disease unit has been established within the country’s social security administration. Another group has been created within the health authority to create, advise upon and monitor aspects of medicinal product policy. The funding of a number of research projects was accomplished under the plan. It is now a priority to maintain financing targeting rare disease research within the country’s research funding structure. Developing and supporting common registries, data banks, follow-up cohorts and platforms is also a major objective to continue in order to avoid fragmentation and duplication and to work in a coordinated national effort. Under the plan, 132 centres of reference have been created to date, as well as a number of centres of competence at the regional level. It is necessary to develop a tool to follow the activities of the centres. The protocol for prioritising epidemiological follow up for rare disease needs to be sustained and a designated source needs to be established to collect cohort data for rare diseases.
This stock-taking of the Gaullist plan occurs at the same time France prepares to assume presidency of the European Union on 1 July. Thus the priority France extends to its own rare disease patients now takes on a broader amplification, as the French EU presidency officially extends its patronage to rare disease projects and programmes on the European level. This is wonderful news for rare disease patients throughout Europe. Concretely, a series of events have been planned during the French EU Presidency: The European Symposium on Rare Diseases and Child Disability is being held in Paris, on 10 October, as part of the Sixth World Rett Syndrome Congress. In addition, a conference entitled Europe for Health at the Service of Patients, organised by the French Ministry of Health, is scheduled to take place in Paris on 13-14 October under the patronage of the French EU presidency. Scheduled topics will include health services, safety legislation, and patient mobility, including a session on centres of reference. The Ninth EPPOSI Workshop on Innovative Therapies for Rare Diseases is also being held in Paris on 16-17 October under the patronage of the French EU presidency, featuring the topic, Orphan medicines: partnering along the chain and across borders to share common strategies and tools. Finally, the European Workshop on National Plans for Rare Diseases, will take place in Paris on 18 November. This workshop is organised in collaboration with the French Ministry of Health and also receives the official patronage of the French EU presidency.