Sotos Syndrome

National Organization for Rare Disorders, Inc.

Skip to the navigation

It is possible that the main title of the report Sotos Syndrome is not the name you expected.

Disorder Subdivisions

  • None

General Discussion

Sotos syndrome is a genetic disorder, described in 1964, characterized by excessive growth prenatally and postnatally, a large dolichocephalic (elongated) head, distinctive facial configuration, and a non-progressive neurological disorder with intellectual disability. Advanced bone age is present in approximately 75 to 85% of patients.

Supporting Organizations

Child Growth Foundation

Tel: 020 8995 0257

Genetic and Rare Diseases (GARD) Information Center

PO Box 8126
Gaithersburg, MD 20898-8126
Tel: (301)251-4925
Fax: (301)251-4911
Tel: (888)205-2311

March of Dimes

1275 Mamaroneck Avenue
White Plains, NY 10605
Tel: (914)997-4488
Fax: (914)997-4763
Email: or
Website: and

Restricted Growth Association

PO Box 5137
Yeovil, BA20 9FF
United Kingdom
Tel: 3001111970
Fax: 3001112454

Sotos Syndrome Support Association

P.O. Box 4626
Wheaton, IL 60189-4626
Tel: (888)246-7772

Sotos Syndrome Support Association of Canada

1944 Dumfries
Quebec, H3P 2R9
Fax: 5147311255

The Arc

1825 K Street NW, Suite 1200
Washington, DC 20006
Tel: (202)534-3700
Fax: (202)534-3731
Tel: (800)433-5255

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to and click on Rare Disease Database under "Rare Disease Information".

The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.

It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.

This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.

Last Updated:  5/21/2015
Copyright  2015 National Organization for Rare Disorders, Inc.