2015 Conference is Full – 2016 Conference to be Portland, Oregon
What is Sotos Syndrome
Sotos syndrome is a genetic condition causing physical overgrowth during the first years of life. Children with Sotos syndrome are often taller, heavier, and have larger heads than their peers.
Sotos syndrome Support Association (SSSA) is made up of families, physicians, genetic counselors, and health care agencies throughout the United States. The SSSA is a non-profit organization which is incorporated in the state of Missouri.
Our Annual Conference
Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome.
Sotos Syndrome: A Handbook for Families
The third edition of this 64-page soft-bound booklet includes general characteristics, genetics, medical concerns, educational solutions and family and social matters. Now available in English and Spanish! by Rebecca Rae Anderson, J.D.; M.S., Bruce A. Buehler, M.D., G. Bradley Schaefer, M.D.
A Journey From Diagnosis through Life
This 30 minute video contains interviews of doctors, families and individuals with Sotos syndrome. Learn the basic characteristics of the syndrome as explained by experts. Hear from real people as they describe their experiences and expectations. NOW AVAILABLE with Spanish, Italian and French subtitling.