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The 30 participatory science projects to improve the lives of rare patients are born from a special ‘expertise’: that of those who know very closely the problem of having to live with a pathology that can be disabling and affect the life of the whole family. Because this is the heart of the program “Participated science for the improvement of the quality of life of people with rare diseases”, wanted and conceived by the National Center for Rare Diseases (Cnmr) of the Higher Institute of Health (ISS) and financed by the Ministry of Health.