UT Southwestern Medical Center has been recognized as a von Hippel-Lindau (VHL) Clinical Care Center by the VHL Alliance, the only medical center in North Texas with this distinction.

VHL is a genetic disease caused by an error in a gene that plays a key role in blood vessel development. Patients with von Hippel-Lindau develop many blood vessel-filled tumors in areas of the body associated with the nervous system including the brain and spinal cord, as well as the back of the eye and inner ear. Although these tumors are typically non-cancerous, they can cause serious complications, such as blindness, hearing loss, and even loss of life. Patients with VHL have a significant risk of developing kidney cancer as well as tumors of the adrenal gland and pancreas.

As a result of the variety of bodily systems affected by VHL, patients must be followed by multiple specialists, including kidney cancer specialists, neurologists, ophthalmologists, and endocrinologists.

UT Southwestern has one of the fastest-growing cancer clinical genetics programs in the country, with expertise in identifying mutations and counseling patients with inherited disease. The Medical Center also has physicians with significant experience in each of the specialty areas required for the treatment of VHL. A dedicated patient navigator helps patients schedule and stay on top of their medical appointments, and patients can take part in clinical trials, should they choose to do so.

“Because von Hippel-Lindau affects so many organ systems, a multidisciplinary approach featuring a team of physicians is essential, and we strive to make coordination of services as smooth as possible for these patients,” said Dr. Kevin Courtney, Assistant Professor of Internal Medicine, a kidney cancer specialist, and a member of the Harold C. Simmons Comprehensive Cancer Center. “Additionally, as VHL is an inherited condition, patients have questions about family members that our outstanding cancer genetics team is able to answer.”

The VHL Alliance, the patient advocacy organization that recognized UT Southwestern’s expertise in treating this rare genetic disease, said approximately 10,000 individuals in the U.S. are living with VHL.