Sotos Syndrome Support Association

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. The SSSA is a non-profit organization which is incorporated in the state of Missouri. The SSSA is an Associate Member of the National Organization of Rare Disorders (NORD) and is a member of the Alliance of Genetic Support Groups. Purpose of the Sotos Syndrome Support Association ?A social support environment for professionals and families of individuals affected by Sotos syndrome so they can meet, exchange ideas and help one another cope with the condition. ?An understanding of the condition through education. ?A quarterly newsletter for members to network ideas, articles, and inspirations. ?An annual meeting in which to meet, organize, and discuss association business. ?An annual conference for professionals and families to hear experts in genetics, neurology, psychology, and education. ?An opportunity for professionals working with individuals affected by Sotos syndrome to collect data for research and to meet colleagues.