Rare diseases are often synonymous with difficulties for sufferers, whether physical, mental or social. Patients suffering from rare diseases face specific problems, such as the long wait for a diagnosis, the geographical distance between the rare disease reference center and home, and the isolation created by this very disabling disease... Children suffering from rare genetic diseases have difficulty accessing higher education, but above all in finding an internship or work-study placement, due to the rarity of their disability. The aim of this study, entitled "Imagine La Suite", is to assess the difficulties encountered by young people with rare genetic diseases and disabilities in their search for vocational and university training or employment.
Study Type
OBSERVATIONAL
Enrollment
300
Patients take part in a survey, completing a form in less than 30 minutes
Imagine Clinical Research
Paris, Île-de-France Region, France
RECRUITINGEntry into a training program, validation of a diploma, obtaining a 1st stable job
Time frame: 18 Months
Characterize the pathology components of the care pathway, barriers/ strengths to inclusion
Time frame: 18 Months
Use of tools to facilitate socio-professional inclusion
Time frame: 18 Months
Number of HR company representatives made aware of rare diseases
Time frame: 18 Months
Fatima clinical project manager, Medical doctor
CONTACT
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