vhl alliance

Active Surveillance

Whether a person currently has a VHL tumor, has a positive genetic test for VHL, or has a known family history for the disease, they should adhere to the Active Surveillance Guidelines


Since it is impossible to predict how the disease will present or progress, active surveillance is exceptionally important for people living with VHL. This includes individuals who are “at risk”, meaning they have a family history of VHL but have not yet had a genetic test to determine whether they themselves have VHL.