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HEC syndrome

Just diagnosed with HEC syndrome?

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

Open the full HEC syndrome hub →

Overview

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

Identifiers: ORPHA:2119 · OMIM 600559 · ICD-10 Q87.8 · GARD 0002620

Find care for HEC syndrome

Authoritative references for HEC syndrome

Common questions

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

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

Where can I find a specialist for HEC syndrome?

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

Are there clinical trials for HEC syndrome?

Tomeko shows live, recruiting studies for HEC 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