vhl alliance

Importance of Surveillance

The VHL Alliance Active Surveillance Guidelines were developed to limit the damage that VHL tumors can cause to a person’s 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 and its Clinical Advisory Council recommend genetic testing and active surveillance as soon after birth as possible. Early surveillance includes an eye/retina examination, a hearing test, blood pressure measurement, and a neurological assessment.

Beginning at age 5, imaging tests such as MRI or ultrasound can be used to aid in early detection and management of any VHL tumors. It is important to detect VHL tumors before any symptoms occur in order to prevent or minimize any adverse effects.

For references, click here