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EAST syndrome

Just diagnosed with EAST syndrome?

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

Open the full EAST syndrome hub →

Overview

EAST syndrome is a rare condition. Also known as Epilepsy-ataxia-sensorineural deafness-tubulopathy syndrome, Epilepsy-ataxia-sensorineural hearing loss-tubulopathy syndrome, SeSAME syndrome, Seizures-sensorineural deafness-ataxia-intellectual disability-electrolyte imbalance syndrome, Seizures-sensorineural hearing loss-ataxia-intellectual disability-electrolyte imbalance syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for EAST syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.

Identifiers: ORPHA:199343 · OMIM 612780 · ICD-10 G40.4 · GARD 0010514

Find care for EAST syndrome

Authoritative references for EAST syndrome

Common questions

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

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

Where can I find a specialist for EAST syndrome?

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

Are there clinical trials for EAST syndrome?

Tomeko shows live, recruiting studies for EAST 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