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HISTORY

As part of the Second National Rare Diseases Plan 2011-2014, a call for proposals (Directive No. DGOS / PF2 / 2013/306 of 29th July 2013 on the structuring of rare diseases health sectors) led to the creation in February 2014 of 23 rare diseases health channels, including the SENSGENE channel dedicated to rare sensory diseases.

The rare diseases health channel is an organization whose mission is to lead and coordinate actions between the actors involved in the management of rare diseases with common aspects, such as the Rare Diseases Reference Centers (CRMR) and Centers of Competence Rare Diseases (CCMR). The rare diseases health channel makes it possible to identify the complementarities between CRMR and to pool certain resources.

The objectives of a rare diseases health channel are:

  • to reduce the period of diagnostic and therapeutic wavering by improving the legibility and thus facilitating the orientation in the health system of people suffering from rare diseases and health professionals. The channel will in particular help doctors or specialists (ENT, ophthalmologists, pediatricians) for the diagnosis and care of their patients suffering from rare sensory diseases.

  • To improve the continuum between actors involved in medical care, diagnostic and therapeutic innovation, clinical, fundamental and translational research and the medico-social sector.

 

Discover the 23 healthcare channels for Rare Diseases

 

 

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, most often national or interregional, constituted by the reference centers labeled to coordinate the definition of referential and therapeutic protocols, epidemiological surveillance and coordination of research activities;
  • a level of care usually regional, with centers of expertise that establish the diagnosis of rare diseases, implement therapeutics when available and organize the management of the patient in connection with the reference centers labeled and local health and medico-social actors and structures.

(source: French Minister of Health)

 

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