Sotos Syndrome

• Who to Contact
• Where to Go to Chat with Others
• Learn More About It
• Web Sites
• Search Google for "Sotos Syndrome"

Who to Contact

Sotos Syndrome Support Association (SSSA)
P.O. Box 4626
Wheaton, Illinois, 60189
888-246-SSSA (toll-free)
sssa@well.com
http://www.sotossyndrome.org

The Sotos Syndrome Support Association provides a social support environment for professionals and families of individuals affected by the syndrome, so they can meet, exchange ideas and help one another cope. They provide an understanding of the condition through education. They publishes a quarterly newsletter, SSSA Newsletter, that offers opportunities for members to network, and share ideas. The newsletter also contains articles, and a current membership roster.

The Sotos Syndrome Support Association has a bibliography of articles that are available to members and audio and video tapes of previous conferences that are available for purchase. They have a 55-page booklet, "Sotos Syndrome," that contains a description of the syndrome from newborn to adulthood; medical and developmental evaluations; and a glossary of terms. The Association hosts annual conference.

Where to Go to Chat with Others

• Soto Syndrome
  For the parents/grandparents raising children diagnosed with SOTOS SYNDROME. Come share your concerns/achievements with others in the same situation.
• Undiagnosed Overgrowth Syndromes
  Support for people dealing with overgrowth syndromes of unknown origin. Possible Syndromes include, but are not limited to, Sotos Syndrome; Perlman Syndrome; Gorlin Syndrome; Weaver Syndrome; Beckwith-Wiedemann Syndrome; Simpson-Golabi-Behmel Syndrome; Bannayan-Riley-Rulvacaba Syndrome; Marshall-Smith Syndrome; Klippel-Trenaunay Syndrome; Parkes Weber Syndrome; Maffucci Syndrome; and Fragile X Syndrome.
  
  

Learn More About It

• How is a diagnosis of Soto syndrome made?
• Sotos Syndrome and SSSA FAQ
• Soto's Syndrome Information Page
  From the National Institute of Neurological Disorders and Stroke
• Soto Syndrome - from OMIM
• Sotos Syndrome Survey Analysis
  
  

Web Sites

• Sotos Syndrome Support Association
• Sotos Syndrome Support Association of Canada
  
  

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Last Updated January 28, 2009 by familyvillage@waisman.wisc.edu
Document Source: http://www.familyvillage.wisc.edu/lib_soto.htm