You are not alone. Here is where to start: learn the basics, find a specialist or center that sees COACH syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full COACH syndrome hub →COACH syndrome is a rare condition. Also known as COACH syndrome, Cerebellar vermis hypoplasia-oligophrenia-congenital ataxia-coloboma-hepatic fibrosis, Gentile syndrome, JS-H, Joubert syndrome with congenital hepatic fibrosis. Tomeko brings together the specialists, research, clinical trials, treatments and community for COACH syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:1454 · OMIM 216360, 619111, 619113 · ICD-10 Q04.3 · GARD 0001410
Start by learning the basics from an authoritative source, find a specialist or center that sees COACH 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 COACH syndrome, filtered to your area.
Tomeko shows live, recruiting studies for COACH syndrome from ClinicalTrials.gov on the hub.