Von hippel-lindau syndrome


How do I find a center of excellence in von Hippel-Lindau syndrome?

The best way to obtain the most accurate, current, clear, and comprehensive information is to be seen at a VHL Clinical Care Centers. These are genetic centers that specialize in the treatment of patients with VHL syndrome. At most centers you will see a medical geneticist, genetic counselor, and nurse who work as a team to answer your questions, discuss testing, identify your at-risk family members, and develop a comprehensive evaluation and treatment plan for you. A Center will work with your current doctors to organize the treatment, tests, and specialists you need. The VHL Alliance has information on Clinical Care Centers.

  • VHL Alliance website. https://vhl.org/
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What doctors do I need to see to manage and treat von Hippel-Lindau syndrome?

What doctors do I need to see to manage and treat von Hippel-Lindau syndrome?

Rare diseases that affect multiple organ systems like von Hippel-Lindau (VHL) syndrome can benefit from a multidisciplinary approach. This approach involves healthcare professionals with specialized skills and expertise. They work together to make treatment recommendations and to provide quality care of individuals and families. Depending upon the specific symptoms in an individual multidisciplinary team may require a specialist in cancer (oncologist); an eye doctor (ophthalmologist); a neurologist; a specialist for kidney disorders (nephrologist); a genetic counselor who can help people understand the disease and the implications for the person and other family members; and a metabolic disease specialist.

Talk to your doctor about the best specialists in your area to follow an individual with VHL syndrome.

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