What Is Sotos Syndrome?
9. Investigational Therapies and Supporting Organizations
Since Sotos syndrome is a rare genetic disorder, there are ongoing investigational therapies that aim to help these patients. Ongoing clinical trials will be posted on www.clinicaltrials.gov. Interested parties may also contact the National Institute of Health Patient Recruitment Office for further information.
There are also various organizations and support groups for patients and family members of patients with Sotos syndrome. Some examples of supporting organizations include Child Growth Foundation, Genetic and Rare Diseases Information Center, Sotos Syndrome Support Association, Sotos Syndrome Support Association of Canada, and The Arc. Online support groups are also available on Facebook and online forums.
Advertisement
