Just diagnosed with Emery-Nelson syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Emery-Nelson syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Emery-Nelson syndrome hub →Overview
Emery-Nelson syndrome is a rare condition. Also known as Hand and foot deformity-flat facies syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Emery-Nelson syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:1927 · OMIM 139750 · ICD-10 Q87.8 · GARD 0002593
Find care for Emery-Nelson syndrome
Authoritative references for Emery-Nelson syndrome
Research & market landscape for Emery-Nelson syndrome
Following Emery-Nelson syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Emery-Nelson syndrome — the real-world landscape behind the condition, in one place.
- Latest Emery-Nelson syndrome research on PubMed ↗
- Recruiting Emery-Nelson syndrome trials on ClinicalTrials.gov ↗
- Explore the Emery-Nelson 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 Emery-Nelson syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Emery-Nelson syndrome?
Emery-Nelson syndrome is a rare condition. Also known as Hand and foot deformity-flat facies syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Emery-Nelson syndrome together in one place.
What are the symptoms of Emery-Nelson syndrome?
Symptoms of Emery-Nelson 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 Emery-Nelson syndrome.
How is Emery-Nelson syndrome treated?
Treatment for Emery-Nelson syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Emery-Nelson syndrome, and review current options with them.
What causes Emery-Nelson syndrome — is it genetic?
The cause and inheritance of Emery-Nelson syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Emery-Nelson syndrome can explain what it means for you and your family.
I was just diagnosed with Emery-Nelson syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Emery-Nelson syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Emery-Nelson syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Emery-Nelson syndrome, filtered to your area.
Are there clinical trials for Emery-Nelson syndrome?
Tomeko shows live, recruiting studies for Emery-Nelson syndrome from ClinicalTrials.gov on the hub.
Related conditions
Other conditions on Tomeko you may be looking for: