vhl alliance

What is VHL?

VHL, or von Hippel-Lindau, disease is a genetic condition characterized by tumors in up to ten areas of the body. These tumors can be benign (harmless) or malignant (spreads to other parts of the body).


Most of these tumors are benign, but VHL tumors in the kidney and pancreas can grow to a stage where they become malignant and can spread to other parts of the body. While tumors or cysts in the spinal cord and brain are benign, they can be serious. As they grow in size, these tumors can cause an increased pressure on the structure around them. Because it is impossible to predict how the disease will present or progress, regular surveillance is incredibly important for people living with VHL.

The VHL surveillance guidelines were developed to make sure that VHL tumors do not cause additional damage to the body. With careful monitoring, early detection, and appropriate treatment, the most harmful consequences of this gene mutation can be greatly reduced, or in some cases, completely prevented.

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