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Anyone have helpful information about Sotos Syndrome?
My daughter is diagnosed with Sotos Syndrome
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My daughter is diagnosed with Sotos Syndrome
Interested in more discussions like this? Go to the About Kids & Teens Support Group.
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Hello @vintagebrittany86, Welcome to Connect. I know it must be difficult to find information when your daughter has such a rare condition as Sotos Syndrome. The National Organization for Rare Disorders does have some information that you might find helpful if you haven't already seen it - Sotos Syndrome: https://rarediseases.org/rare-diseases/sotos-syndrome/. There is also a patient/family association website that might be really helpful.
-- Sotos Syndrome Support Association (SSSA): https://www.sotossyndrome.org/