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Genetic and Rare Diseases Information Center (GARD)

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Von Hippel-Lindau disease

Other Names for this Disease
  • VHL
  • VHL syndrome
  • Von Hippel-Lindau disease
  • Von Hippel-Lindau syndrome
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How might Von Hippel-Lindau (VHL) disease be treated?

Treatment for Von Hippel-Lindau (VHL) disease varies according to the location and size of the tumor and its associated cyst. In general, the objective of treatment is to treat the growths when they are causing symptoms but while they are still small so that they do not cause permanent problems by putting pressure on the brain or spine, blocking the flow of cerebrospinal fluid in the nervous system, or impairing vision. Treatment of most cases of VHL disease usually involves surgery to remove the tumors before they become harmful. Certain tumors can be treated with focused high-dose irradiation. Individuals with VHL disease need careful monitoring by a physician and/or medical team familiar with the disorder.[1]

You can access more detailed information about the treatment of VHL disease at the following web pages:
Last updated: 5/20/2013

  1. NINDS Von Hippel-Lindau Disease (VHL) Information Page. National Institute of Neurological Disorders and Stroke (NINDS). 2008; Accessed 2/9/2009.

Management Guidelines

  • 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. Click on the link to view the article on this topic.

Clinical Trials & Research for this Disease

  • lists trials that are studying or have studied Von Hippel-Lindau disease. Click on the link to go to 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.