Rare disease centres were created under the impetus of France’s first national rare disease plan (PNMR1) and are based within hospitals. They provide care and treatment for patients suffering from rare diseases.
Reference centres on rare diseases (CRMR)
The reference centres include highly specialised, multi-disciplinary teams (physicians, psychologists, dieticians, etc.) whose clinical and scientific expertise with a rare disease or set of rare diseases is recognised by the French Ministry of Health. They may be located in a single hospital (single-site reference centre) or in several hospitals. In the latter case, it is called a multi-site reference centre with a coordinating site and one or more member sites..
The reference centres have several missions:
- Care and follow-up of patients with rare diseases
- Expertise and consulting
- Teaching and training.
Competence centres on rare diseases (CCMR)
Competence centres are identified by the reference centres. On the regional level, they contribute to all of the reference centre’s missions. In particular, they ensure the proper care and follow-up of patients with rare diseases, close to patients’ homes.
FIMATHO coordinates 13 reference centres (including four coordinating centres and nine member centres), specialised in the care and treatment of rare abdominal and thoracic diseases and malformations, as well as 95 competence centres.