Von Hippel Lindau Disease

Testing, Counseling, and Care for a Rare Disease

Von Hippel Lindau (VHL) disease is a rare genetic disease that causes tumors and cysts to grow in the body. NewYork-Presbyterian/Morgan Stanley Children's Hospital has a renowned comprehensive VHL Clinical Care Center for children and adults. We offer genetic counseling and genetic testing to individuals and families who are concerned about their risk of VHL disease, based upon:

  • a personal or family history of hemangioblastoma in the brain, spinal cord, or eyes
  • young or bilateral renal cell carcinoma
  • pheochromocytoma
  • endolymphatic tumor

If you or your child has been diagnosed with VHL disease, we offer comprehensive annual screenings to catch any problems early and intervene before any damage occurs in the body. You have access to a team of specialists in radiology, ophthalmology, neurology, neurosurgery, urology, endocrinology, oncology, gastroenterology, and obstetrics available to manage the effects of VHL.

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