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The competence centers

The structuring of the care sector for patients suffering from a rare disease is one of the objectives of axis n°6 of the National Rare Diseases Plan 2005-2008: "improving access to care and quality of care".

The reference centers labeled do not have the vocation to take care of all the patients suffering from rare diseases. One of the missions assigned to them is to gradually organize the territorial network with existing structures of care that will be identified as "centers of competence". These centers of competence are designed to ensure the care and follow-up of patients, close to their homes, and to participate in all the missions of reference centers.

The National Rare Diseases Plan foresees the structuring and grading of care for patients with rare diseases on two levels:

  • a level of expertise and recourse, usually national or interregional, made up of reference centers labeled with the aim of coordinating the definition of referential and therapeutic protocols, epidemiological surveillance and coordination of research activities;
  • a level of care that is usually regional, with centers of competence that establish the diagnosis of rare diseases, implement therapeutics when available and organize patient care in relation to reference centers, local health and medico-social actors and structures.

The number of centers of competence and their geographical distribution are determined according to:

  • the prevalence and typology of rare diseases,
  • the territorial organization of care for the disease(s) concerned,
  • the care of the patients concerned,
  • epidemiological criteria specific to the regions concerned,
  • frequency of use of care,
  • the number of reference centers labeled for the group of rare diseases concerned.

 

 (source: French Minister of Health)

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