Sotos Syndrome Support Association - SSSA
Organization URL(s)
sssa@well.comwww.well.com/user/sssa/
Other Contact Information
Three Danada Square East
#235
Wheaton,
IL 60187
888-246-7772 (Voice - Toll-free)
Description
The Sotos Syndrome Support Association (SSSA) was organized in 1988 to provide a support network for families and individuals affected by the syndrome. Sotos syndrome, also known as cerebral gigantism, is a neurological brain-based disorder resulting in physical and mental developmental delays in children. The goals of the SSSA are to provide a social support environment for families and individuals with Sotos syndrome; increase public awareness and education about the disorder; and provide opportunites for professionals working with affected individuals to collect and share data for research. The SSSA has members across the United States, Canada and Great Britain, and sponsors an annual conference.
Online Resources
- What is Sotos Syndrome?
http://www.well.com/user/sssa/whatisit.htm
Print Resources
The SSSA publishes a quarterly newsletter for its members, as well as a bibliography of articles and books on Sotos syndrome. Planned publications include an educational brochure.