Von Hippel-Lindau disease
Other Names for this Disease
- VHL syndrome
- Von Hippel-Lindau disease
- Von Hippel-Lindau syndrome
- Familial cerebelloretinal angiomatosis
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Treatment for Von Hippel-Lindau (VHL) disease depends on the location and size of tumors. In general, the goal is to treat growths when they cause symptoms, but are still small so they don't cause permanent damage. Treatment usually involves surgical removal of tumors. Radiation therapy may be used in some cases. All people with VHL disease should be carefully followed by a physician or medical team familiar with the disorder.
Last updated: 2/2/2016
- NINDS Von Hippel-Lindau Disease (VHL) Information Page. NINDS. February 1, 2016; http://www.ninds.nih.gov/disorders/von_hippel_lindau/von_hippel_lindau.htm.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
- ClinicalTrials.gov lists trials that are studying or have studied Von Hippel-Lindau disease. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The VHL Family Alliance has teamed up with the National Disease Research Interchange (NDRI) to create a tissue bank to help scientists find ways of improving diagnosis and treatment of Von Hippel-Lindau syndrome. To learn more about this tissue bank, click here.