You are not alone. Here is where to start: learn the basics, find a specialist or center that sees Von Hippel-Lindau syndrome, look for clinical trials, and connect with others living with it — all in one place.
Open the full Von Hippel-Lindau syndrome hub →Von Hippel-Lindau syndrome is a rare condition. Also known as Familial cerebelloretinal angiomatosis, Lindau disease, VHL, Von Hippel-Lindau syndrome. Tomeko brings together the specialists, research, clinical trials, treatments and community for Von Hippel-Lindau syndrome so you can go from overwhelmed to oriented. For authoritative medical detail, see the reference sources below.
Identifiers: ORPHA:892 · OMIM 193300 · ICD-10 Q85.8 · GARD 0007855
Start by learning the basics from an authoritative source, find a specialist or center that sees Von Hippel-Lindau 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 Hippel-Lindau syndrome, filtered to your area.
Tomeko shows live, recruiting studies for Von Hippel-Lindau syndrome from ClinicalTrials.gov on the hub.