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 →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
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.
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat HEC syndrome, filtered to your area.
Tomeko shows live, recruiting studies for HEC syndrome from ClinicalTrials.gov on the hub.