Just diagnosed with Von Voss-Cherstvoy syndrome?
You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Von Voss-Cherstvoy syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full interactive Von Voss-Cherstvoy syndrome hub →Overview
Von Voss-Cherstvoy syndrome is a rare condition. Also known as DK phocomelia syndrome, Phocomelia-thrombocytopenia-encephalocele-urogenital malformations syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Von Voss-Cherstvoy syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:3439 · OMIM 223340 · ICD-10 Q87.8 · GARD 0001894
Find care for Von Voss-Cherstvoy syndrome
Authoritative references for Von Voss-Cherstvoy syndrome
Research & market landscape for Von Voss-Cherstvoy syndrome
Following Von Voss-Cherstvoy syndrome for research or industry? Tomeko brings together the recruiting trials, the latest literature, patient organizations, and the specialist and care-center footprint for Von Voss-Cherstvoy syndrome — the real-world landscape behind the condition, in one place.
- Latest Von Voss-Cherstvoy syndrome research on PubMed ↗
- Recruiting Von Voss-Cherstvoy syndrome trials on ClinicalTrials.gov ↗
- Explore the Von Voss-Cherstvoy 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 Von Voss-Cherstvoy syndrome and every rare condition. See how Tomeko works with industry →
Common questions
What is Von Voss-Cherstvoy syndrome?
Von Voss-Cherstvoy syndrome is a rare condition. Also known as DK phocomelia syndrome, Phocomelia-thrombocytopenia-encephalocele-urogenital malformations syndrome. For an authoritative medical description see the reference sources on this page; Tomeko brings the specialists, clinical trials, patient organizations and community for Von Voss-Cherstvoy syndrome together in one place.
What are the symptoms of Von Voss-Cherstvoy syndrome?
Symptoms of Von Voss-Cherstvoy 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 Von Voss-Cherstvoy syndrome.
How is Von Voss-Cherstvoy syndrome treated?
Treatment for Von Voss-Cherstvoy syndrome depends on the individual and is managed by specialists. Use Tomeko to find clinicians and Centers of Excellence who see Von Voss-Cherstvoy syndrome, and review current options with them.
What causes Von Voss-Cherstvoy syndrome — is it genetic?
The cause and inheritance of Von Voss-Cherstvoy syndrome are described in the authoritative references linked on this page. A genetics or specialist clinician who treats Von Voss-Cherstvoy syndrome can explain what it means for you and your family.
I was just diagnosed with Von Voss-Cherstvoy syndrome — what should I do first?
Start by learning the basics from an authoritative source, find a specialist or center that sees Von Voss-Cherstvoy syndrome, and connect with a patient organization. Tomeko brings these together on one hub.
Where can I find a specialist for Von Voss-Cherstvoy syndrome?
Use Tomeko's specialist and Centers-of-Excellence directories to find clinicians who treat Von Voss-Cherstvoy syndrome, filtered to your area.
Are there clinical trials for Von Voss-Cherstvoy syndrome?
Tomeko shows live, recruiting studies for Von Voss-Cherstvoy syndrome from ClinicalTrials.gov on the hub.
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