Study of work and social inclusion for young adults with rare genetic conditions
This study looks at how young adults aged 15–25 with rare genetic conditions (like certain bone, skin, hearing, or facial conditions) are doing in school, work, and social life. Researchers want to understand what helps or prevents young people with these conditions from being included in their communities.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You are between 15 and 25 years old
- You have a rare genetic disease that was confirmed by a genetic test and started in childhood
- Your rare condition is one of these types: epilepsy without brain damage, skin conditions, bone disorders, facial differences, or hearing loss
- You have been followed or treated at Necker Hospital (in Paris) through one of their disease reference centers
- You do not have an intellectual disability (your IQ is 70 or higher)
- You and your parent (if under 18) agree to participate
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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