Sotos Syndrome

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Sotos Syndrome is also known as cerebral gigantism. It is a condition that occurs due to genetic reasons which leads to having physical overgrowth upon the first years of their life and having a head and facial appearance that are distinctive. The rapid physical overgrowth goes along with the delay of social, language, cognitive and motor development as well as the retardation of the mentality with ranges from mild to severe form.

Basics

Parent Guide-Original article written by Bridget Veitch (updated by Simon Lane)

Family Information Leaflet

Parent Support Group

Organized in 1988, the Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States and the world. The SSSA is a nonprofit 501(c)(3) organization which is incorporated in the state of Missouri and run completely by volunteers.

The SSSA is a Member of the National Organization of Rare Disorders (NORD).

Other Groups

Email Community at Yahoo Groups

Sotos Syndrome Support Association of Canada

A Support Group for Sotos Syndrome in Australia

Sotos Syndrome Support Association of Finland.

The Arc

The Danish Association for Sotos Syndrome

Sotos Association – L’Eveil – France

Asociacion Sotos – Spain

ASSI Gulliver – Italy

Child Growth Foundation – UK

Videos

YouTube Video on the Basics of Sotos Syndrome

Sotos Syndrome- Longer more complete overview

School

School primer- Information on how to serve a student with Sotos Syndrome.

Behavioral and emotional characteristics in children with Sotos syndrome and learning disabilities

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Case Study

Hana Feels Good at School: An Example of Good Teaching Practice in Integrating a Girl with Sotos Syndrome into Primary School

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