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 interactive 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
Research & market landscape for HEC syndrome
Following HEC syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for HEC syndrome — the real-world landscape behind the condition, in one place.
- Latest HEC syndrome research on PubMed ↗
- Recruiting HEC syndrome trials on ClinicalTrials.gov ↗
- Explore the HEC syndrome research & specialist footprint on Tomeko
Researchers, patient organizations & industry: Tomeko provides de-identified, no-PHI demand and engagement signal, trial awareness, and a labeled, editorially-firewalled presence for HEC syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is HEC syndrome?
HEC syndrome is a rare condition. Also known as Hydrocephalus-endocardial fibroelastosis-cataract syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for HEC syndrome together in one place.
What are the symptoms of HEC syndrome?
Symptoms of HEC syndrome vary from person to person. For a reviewed, plain-language overview see the authoritative references below (NIH GARD, Orphanet), and discuss your own symptoms with a clinician who treats HEC syndrome.
How is HEC syndrome treated?
Treatment for HEC syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see HEC syndrome, and review current options with them.
What causes HEC syndrome — is it genetic?
The cause and inheritance of HEC syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats HEC syndrome can explain what it means for you and your family.
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.
Related conditions
Other conditions on Tomeko you may be looking for: