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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Sotos syndrome


Other Names for this Disease
  • Cerebral gigantism
  • Distinctive facial appearance, overgrowth in childhood, and learning disabilities or delayed development
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

I am a therapist in need of additional information regarding Sotos syndrome.  Are there any support groups with local state chapters?  I have a client that has been diagnosed with Sotos syndrome and I would like to refer the parents to a support group.

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is Sotos syndrome?

Sotos syndrome is a condition characterized mainly by distinctive facial features; overgrowth in childhood; and learning disabilities or delayed development. Facial features may include a long, narrow face; a high forehead; flushed (reddened) cheeks; a small, pointed chin; and down-slanting palpebral fissures. Affected infants and children tend to grow quickly; they are significantly taller than their siblings and peers and have a large head. Other signs and symptoms may include intellectual disability; behavioral problems; problems with speech and language; and/or weak muscle tone (hypotonia). Sotos syndrome is usually caused by a mutation in the NSD1 gene and is inherited in an autosomal dominant manner. About 95% of cases are due to a new mutation in the affected person and occur sporadically (are not inherited).[1]
Last updated: 5/27/2015

Are there any support organizations for individuals with Sotos syndrome?

The following organizations provide support for individuals with conditions such as Sotos syndrome.  

Sotos Syndrome Support Association
P.O. Box 4626
Wheaton, IL   60189
Toll -free: 1-888-246-7772
E-mail: info@sotossyndrome.org
Web site: http://www.sotossyndrome.org/

Sotos Syndrome Support Association of Canada
1944 Dumfries
Montreal
Quebec Intl H3P 2R9
E-mail: info@sssac.com
Web site http://www.sssac.com

Child Growth Foundation
2 Mayfield Avenue
Chiswick
London None W4 1PW
Telephone #: +44- 20-8 995 0257
E-mail: info@childgrowthfoundation.org or jenny.child@childgrowthfoundation.org
Web site: http://www.childgrowthfoundation.org

The Arc of the United States (with local state chapters)
1660 L Street, NW, Suite 301
Washington, DC 20036
Toll-free: 1-800-433-5255
Telephone: 202-534-3700
Fax: 202-534-3731
E-mail: Info@thearc.org
Web site: http://www.thearc.org

Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Telephone: 310-264-0826
E-mail: getinfo@madisonsfoundation.org
Web site: http://www.madisonsfoundation.org

Last updated: 3/29/2013

References
Other Names for this Disease
  • Cerebral gigantism
  • Distinctive facial appearance, overgrowth in childhood, and learning disabilities or delayed development
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.