PRISMS is dedicated to providing information and support to families of persons with Smith-Magenis Syndrome (SMS), sponsoring research and fostering partnerships with professionals to increase awareness and understanding of SMS.

PRISMS has compiled a list of resources that we hope you will find helpful as you cope with the impact of the coronavirus pandemic.

Please see the COVID-19 Resources page for more information.

Newly Diagnosed?

Are you associated with someone who has been newly diagnosed with Smith-Magenis Syndrome?

What You Should Know

You are embarking on a difficult journey, but one that is rewarding.
You will grieve when your child struggles, but you will revel in their accomplishments.

What is SMS?

Smith-Magenis syndrome (SMS) is a rare neurobehavioral disorder characterized by a recognizable pattern of physical, behavioral, and developmental features. It is caused by particular genetic changes on chromosomal region 17p11.2, which contains the gene RAI1. MORE >

What Treatment is Available?

There are no medications that can “cure” SMS or eliminate the core symptoms. However, there are medications that can help some people with SMS function better. For example, medication might help manage high energy levels, inability to focus, or seizures. MORE >

How Rare is SMS?

Although the exact incidence is not known, it is estimated that SMS occurs in about 1/15,000 to 1/25,000 births. SMS is under-diagnosed, but as awareness of the syndrome increases, the number of people identified grows each year. MORE >

How is SMS Diagnosed?

The diagnosis of Smith-Magenis Syndrome (SMS) is usually confirmed through a clinical blood test called a chromosome analysis. Diagnosis can also be made through a cytogenetic test and FISH (fluorescence in situ hybridization) or by chromosome microarray analysis (CGH). MORE >

Please Donate

Our continued efforts depend on donations and gifts from people like you. Won’t you help?

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Change Lives. Donate Now.

Your contribution is more than a donation.
It is how we will impact the lives of thousands affected by SMS, the families who love them, and the professionals who serve them. Help us move the dial on SMS research forward.

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Recent SMS News

  • Conference Updates for 2021 (and 2022)

    As a community living with SMS, we know that sometimes plans don’t always go as expected. No one could have predicted that a rare event, the pandemic in 2020, would cause us to cancel the…

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  • An Update on our SMS Clinics

    Our PRISMS Clinic and Research Consortium (PCRC) has an updated page! Check out the updated page at We hope that this new format can help our families and professionals easily find the expert SMS care that…

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