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.