The rare disease Centres, created under the leadership of the first national rare disease plan (PNMR1), are based in hospitals and take care of patients with rare diseases.
The reference Centres bring together highly specialized multidisciplinary teams (doctors, psychologists, dieticians, etc.) whose clinical and scientific expertise for a disease or a group of rare diseases is recognized by the Ministry of Health. They can be located in a single hospital centre (single-site Reference Centre) or in several hospital Centres. We then speak of a multi-site Reference Centre with a coordinating site and one or more constituent sites.
Reference Centres have several missions:
- Management and follow-up of patients with rare diseases
- Expertise and recourse
- Education and training
Competence Centres are identified by Reference Centres. At the regional level, they contribute to all the missions of the Reference Centre in conjunction with them. In particular, they ensure the proper care and monitoring of patients with a rare disease, near their home. The CRACMO Centres work in particular with the Reference Centre in the drafting of common care and research protocols.
An epidemiological register of oesophageal atresia was also set up in January 2008 by CRACMO.
Following re-certification in 2010, 33 Competence Centres now make up the CRACMO care network.