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.

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 >

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Recent SMS News

  • Navigating a Difficult Road

    By: Hayley, mom to Carter Rare Disease Day is an observance held on the last day of February to raise awareness for rare diseases and improve access to treatment and medical representation for individuals with…

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  • Spreading Awareness in Puerto Rico

    By: Shelia Hernandez-Hale, PRISMS Regional Representative Puerto Rico   On Smith-Magenis Awareness Day on November 17th, Shelia Hernandez-Hale, PRISMS Regional Representative for Puerto Rico, engaged in various activities to spread awareness of Smith-Magenis syndrome in…

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