Resources- Specific Diagnosis Card Catalog- Sotos Syndrome

Who to Contact

Sotos Syndrome Support Association (SSSA)
3 Danada Square E.
PMB Suite 235
Wheaton, Illinois, 60187
888-246-SSSA (toll-free)
E-mail: sssa@well.com
Web: www.well.com/~sssa/

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 new 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 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

Links

Sotos Syndrome Support Association

Sotos Syndrome Support Association of Canada