You are not alone. Here is where to start: learn the basics, find a specialist or center that sees VACTERL with hydrocephalus, look for clinical trials, and connect with others living with it — all in one place.
Open the full VACTERL with hydrocephalus hub →VACTERL with hydrocephalus is a rare condition. Also known as Sujansky-Leonard syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for VACTERL with hydrocephalus so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:3412 · OMIM 276950, 314390 · ICD-10 Q87.8 · GARD 0000272
Start by learning the basics from an authoritative source, find a specialist or center that sees VACTERL with hydrocephalus, 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 VACTERL with hydrocephalus, filtered to your area.
Tomeko shows live, recruiting studies for VACTERL with hydrocephalus from ClinicalTrials.gov on the hub.