vhl alliance

Surveillance & Diagnosis

Early diagnosis is the key to the providing patients with the best care and most effective treatment. When there is known family history, it is important to conduct DNA testing as soon as possible to determine if the patient has VHL disease, regardless if the person currently has a tumor.


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.

The VHL Alliance is your resource for VHL diagnosis, surveillance and treatment. This section provides information and resources for health professionals seeking to learn more about VHL disease. For more information, review the VHL Handbook or check out the additional resources available on the Resources page.

Biennially, the VHL Alliance, together with a leading academic medical center holds the International VHL Medical Symposium bringing together the leaders in VHL basic, translational, and clinical research, as well as the leading clinicians in clinical VHL treatment. Click here for more information about the 2018 Symposium in The Netherlands.