The Sotos Syndrome Support Association (SSSA) in the United States is a non-profit organization that was organized in 1988. The SSSA has a substantial amount of information available on the web. The SSSA also has a research library with over 160 published articles available to its members.

Each summer the SSSA holds an annual conference. The conference is an excellent place to meet with other parents who have a child with Sotos syndrome, let your child meet others with the same syndrome, and learn from the wealth of knowledgeable speakers at the conference. Information will be available on the SSSA web site above as it becomes available. Upcoming conferences are:

Southern California – July 10-12, 2020

A resource through the SSSA that may be particularly informative:

  • Sotos Syndrome: A Handbook for Families third edition by Rebecca Anderson, J.D., M.S., Bruce Buehler, M.D., and Bradley Schaefer, M.D.

Web sites that may be of interest to you:

  • SSSA – Sotos Syndrome Support Association
  • L’Eveil – Sotos forum in France
  • Sotos Syndrome E-mail Community (free)
  • CORD – Canadian Organization for Rare Disorders
  • Disability WebLinks – Web links, including educational and tax rights, for Canadians with disabilities that is accessible by province or Canada as a whole
  • Australia support group – Debra Hope
  • The Danish Association for Sotos Syndrome
  • Sotos Syndrome Support Association of Finland
  • Sotos Syndrome Medical Discussion Group
  • Planned Lifetime Advocacy Network
  • Sotos Syndrome Asociation of Spain