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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Sotos Syndrome Support Association

a/k/a: SSSA


P.O. Box 4626
Wheaton, IL 60189-4626



800 Number




Email Address


The Sotos Syndrome Support Association (SSSA) is a voluntary, non-profit organization dedicated to providing information and support to individuals affected by Sotos syndrome, their families, and healthcare professionals. Sotos syndrome is a rare genetic disorder characterized by excessive growth that occurs prior to and after birth (prenatally and postnatally). At birth, affected infants have unusually increased body length that is abnormal in proportion to weight, which may also be above average; in addition, newborns typically demonstrate advanced bone growth, abnormally large hands and/or feet, and characteristic facial features. The purpose of the association is to establish a social support environment for professionals and families of individuals affected by Sotos syndrome so that they can meet to exchange ideas and help one another cope; enhance the understanding of Sotos syndrome through education; coordinate an annual meeting; and provide an opportunity for professionals working with individuals affected by Sotos syndrome to collect data for research and to meet colleagues.

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