An observational study in Rare Diseases, sponsored by Imagine Institute. Recruiting at 1 site in France. Open to participants aged 15 Years to 25 Years. Per ClinicalTrials.gov, last updated 2026-04-14.
Sponsored by Imagine Institute · Observational
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.
592 studies on the registry are indexed under Rare Diseases; 125 are open to participants now.
This study's planned enrollment of 300 is above the median of 133 across 208 observational studies indexed under Rare Diseases.
Browse Rare Diseases studies →Imagine Institute is the lead sponsor of 31 studies on the registry; 15 are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients currently aged 15-25 born between 1997 and 2007 and followed at Necker in the networks of the following disease reference centers:
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Rare genetic disease confirmed by a genetic test, originating in childhood and followed at Necker in the networks of the following disease reference centers:
Exclusion Criteria:
Patients take part in a survey, completing a form in less than 30 minutes
Entry 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
Plan to share: Undecided
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Imagine Institute