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