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Sotos syndrome

Just diagnosed with Sotos syndrome?

You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Sotos syndrome, look for clinical trials, and connect with others living with it — all in one place.

Open the full Sotos syndrome hub →

Overview

Sotos syndrome is a rare condition. Also known as Cerebral gigantism. Tomeko brings together the specialists, research, clinical trials, treatments and community for Sotos syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.

Identifiers: ORPHA:821 · OMIM 117550, 617169, 618677 · ICD-10 Q87.3 · GARD 0010091

Find care for Sotos syndrome

Authoritative references for Sotos syndrome

Common questions

I was just diagnosed with Sotos syndrome — what should I do first?

Start by learning the basics from an authoritative source, find a specialist or center that sees Sotos syndrome, and connect with a patient organization. Tomeko brings these together on one hub.

Where can I find a specialist for Sotos syndrome?

Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Sotos syndrome, filtered to your area.

Are there clinical trials for Sotos syndrome?

Tomeko shows live, recruiting studies for Sotos syndrome from ClinicalTrials.gov on the hub.

Informational only — not medical advice. Always consult a qualified clinician. Provider and reference data from public sources (NIH GARD, Orphanet, OMIM, HPO, MONDO, ClinicalTrials.gov, CMS NPPES). © Tomeko · tomekohealth.com