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"Resources" on this report.
Copyright 1986, 1990, 1995, 1997, 1998, 2005, 2009
NORD is very grateful to Juan F. Sotos, MD, Chief of Section – Endocrinology & Metabolism, Nationwide Children’s Hospital, for assistance in the preparation of this report.
Synonyms of Sotos Syndrome
Disorder Subdivisions
General Discussion
Sotos syndrome is a variable genetic disorder characterized by excessive growth before and after birth. One of the major features of Sotos syndrome is a particular facial appearance that includes facial flushing, an abnormally prominent forehead (frontal bossing), down-slanting eyelid folds (palpebral fissures), prominent, narrow jaw, a long narrow face and a head shape that is similar to an inverted pear. Height and head circumference are measured to be greater than average for most affected children. Developmental delays are present in most children with Sotos syndrome and can include motor and language delays as well as mental retardation ranging from mild to severe. Other problems associated with Sotos syndrome include jaundice in newborns, curved spine (scoliosis), seizures, crossed eyes (strabismus), conductive hearing loss, congenital heart defects, kidney abnormalities and behavioral problems. Affected individuals also have a slightly increased risk to develop specific types of tumors. Sotos syndrome is caused by an abnormality (mutation) in the NSD1 gene.
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Organizations related to Sotos Syndrome
- Arc
1660 L Street, NW, Suite 301
Washington DC 20036
Phone #: 202-534-3700
800 #: 800-433-5255
e-mail: info@thearc.org
Home page: http://www.thearc.org
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
- MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- March of Dimes Birth Defects Foundation
1275 Mamaroneck Avenue
White Plains NY 10605
Phone #: 914-997-4488
800 #: 888-663-4637
e-mail: Askus@marchofdimes.com
Home page: http://www.marchofdimes.com
- Restricted Growth Association
PO Box 1024
Peterborough Intl PE1 9GX
Phone #: 030-0 1-11 1970
800 #: --
e-mail: office@restrictedgrowth.co.uk
Home page: http://www.restrictedgrowth.co.uk
- Sjældne Diagnoser / Rare Disorders Denmark
Frederiksholms Kanal 2, 3rd Floor
Copenhagen K None 1220
Phone #: 45 -33 -14 00 10
800 #: N/A
e-mail: mail@sjaeldnediagnoser
Home page: http://www.raredisorders.dk
- Sotos Syndrome Support Association
P.O. Box 4626
Wheaton IL 60189-4626
Phone #: N/A
800 #: 888-246-7772
e-mail: info@sotossyndrome.org
Home page: http://www.sotossyndrome.org/
- Sotos Syndrome Support Association of Canada/Association Canadienne d'entraide du Syndrome de Sotos
1944 Dumfries
Montreal, Quebec Intl H3P 2R9
Phone #: --
800 #: --
e-mail: info@sssac.com
Home page: http://www.sssac.com
- Sotos Syndrome Support Group of Great Britain
c/o Child Growth Foundation
4 Mayfield Avenue
Chiswick
London None W4 1PW
Phone #: --
800 #: --
e-mail: N/A
Home page: N/A
- Sotos, Juan, M.D.
Nationwide Children’s Hospital
700 Children's Drive
Columbus OH 43205
Phone #: 614-722-5125
800 #: --
e-mail: N/A
Home page: N/A
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