This "Rare Community" is a gathering of individuals affected by Smith-Magenis syndrome.
We help them meet virtually to discuss their experiences and to define future projects. This is a web page dedicated to them to regroup relevant documents.
To join this community, contact us. (Note that this is open to Quebec residents only)
Documents
- RQMO health form
- Smith-Magenis syndrome (Consumer Encyclopedia – Orphanet)
- Orphanet
- Recommendations for clinical practice (Haute Autorité de santé – France)
- Emergency care (Orphanet)
- Orphanet Encyclopedia of Disability
- Living with SMS
- Smith-Magenis Syndrome Information and Advice for Caregivers & Profressionals
- Medical Management Guidelines for an Individual Diagnosed With SMS
- Smith-Magenis Syndrome-Clinical Review, Biological Background and Related Disorders
- Behavior SMS-PRISM website
- Caregivers’ experience of sleep management in SMS: research study published on Orphanet Journal of Rare Diseases
- Psychiatric and neurological manifestations in adults with Smith-Magenis syndrome: A scoping review
WEBINARS
- Genetics of Smith-Magenis syndrome and state of research – December 11, 2024