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About VHL Disease

VHL disease is a hereditary condition characterized by tumors that can occur in one or more areas of the body. These tumors can be benign (noncancerous) or malignant (cancerous). However, even benign VHL-associated tumors can cause medical problems.

Not every individual with VHL has the same presentation, and it can be difficult to predict how someone may be affected. Tumors may include:

  • Central nervous system (cerebellar, brainstem and spinal) hemangioblastomas
  • Retinal hemangioblastomas
  • Endolymphatic sac tumors
  • Epididymal cysts
  • Pancreatic neuroendocrine tumors and cysts
  • Pheochromocytomas and paragangliomas
  • Renal cell carcinoma

Expert Diagnosis, Screening and Treatment

Patients with VHL, as well as people with known family history of VHL, can benefit from care provided by a team that has recognized experience with this complex condition. Early detection, active surveillance and appropriate treatment can greatly reduce the most serious consequences of VHL.

The VHL Program at Northwestern Memorial Hospital includes a multidisciplinary team of experienced specialists who work together to keep patients healthy by detecting tumors early. If a tumor is detected, expert treatment is available through the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. In addition, genetic counselors with in-depth knowledge of VHL are available to provide advice and support.

To learn more or to make an appointment, email or call 312.926.0409, TTY 711.