Von Hippel-Lindau Clinical Care Center

UNC Healthcare has a long standing tradition and culture of engaging in a multidisciplinary approach to managing complex medical problems. This approach is what is needed for evaluating and treating von Hippel-Lindau syndrome, a condition that can affect multiple organ systems.

Rathmell and patient

UNC was selected by the VHL Family Alliance as a VHL Clinical Care Center in January 2012, and joined the ranks of over 20 other Clinical Care Centers across the United States.

Kidney cancer (renal cell carcinoma) sometimes occurs as a part of familial syndromes in which multiple members of a family can be affected with kidney cancers and often other growths. There are several syndromes which predispose to kidney cancers in one or both kidneys. These syndromes include the following:

  • Von Hippel-Lindau (VHL)
  • Birt-Hogg-Dube syndrome (BHD)
  • Hereditary papillary renal cell cancer (pRCC)
  • Tuberous Sclerosis (TSC)
  • Hereditary Leiomyomatosis and Renal Cell Carcinoma (HLRCC) 

The long term care of patients with a family syndrome of kidney cancer is often complex and involves the attention of many medical specialties and health care providers. At UNC we have a team of specialists in the fields of Genetics, Urology, Medical Oncology, Ophthalmology, Audiology, Neurology/Neurosurgery, Pediatrics, Nephrology, Advanced Practice Nursing, and Social Work to integrate whatever care is needed based on a comprehensive risk assessment. 

The benefits for patients and families with VHL, BHD, or another familial syndrome to be treated at a VHL Clinical Care Center include the following:

  • Access to relevant specialists in one institution, with clustering of appointments and coordinated care.
  • Access to the services such as MRI and CT scanners, ultrasound, nuclear medicine, angiography, physical therapy, genetic testing, neurological rehabilitation, radio frequency ablation and cryotherapy that are right for your medical condition
  • Access to the latest research and expertise about less common conditions
  • Coordination and communication among providers