UF Health has been recognized as a leader in the treatment of von Hippel-Lindau (VHL) syndrome, a rare inherited disorder associated with tumors, becoming one of only 40 VHL Alliance Clinical Care Centers in the United States.
Joining the VHL Alliance, the preeminent advocacy organization for the disease, strengthens UF Health’s collaborative effort to advance research, share best practices and improve outcomes for patients with VHL worldwide.
“UF Health’s inclusion in the Clinical Care Center network ensures that VHL patients will have access to top-tier care, innovative treatments and comprehensive support services,” said Hans Shuhaiber, M.D., a clinical assistant professor in the department of neurology in the UF College of Medicine and a member of the UF Health Cancer Center. “The partnership not only enhances the quality of care, but also fosters a sense of community and empowerment among those affected by VHL and the clinicians providing VHL patients with groundbreaking treatment options.”
The Clinical Care Center network encourages collaboration between leading VHL research centers such as the UF Health Cancer Center, improving treatment methods through initiatives like a tumor board.
VHL causes tumors and cysts to grow in certain parts of the body, including the brain, spinal cord, eyes, inner ear, adrenal glands, pancreas, kidney and reproductive tract. The tumors are usually not cancerous, but some may be. About 1 in 30,000 people have VHL, and about 10% of people with VHL do not have any family history of the condition.
Each Clinical Care Center has a multidisciplinary team of experienced VHL specialists who work together to provide holistic patient care. The VHL team at UF Health includes a genetic counselor and physician experts in endocrinology, urology, neurosurgery, ophthalmology, otolaryngology, surgery, psychiatry, pediatrics and medical oncology.
VHL-related tumors include hemangioblastomas, which are blood vessel tumors of the brain, spinal cord and retina. People with VHL also have an increased risk of developing clear cell renal cell carcinoma, a type of kidney cancer, and a type of tumor in the pancreas known as pancreatic neuroendocrine tumor. Tumors of the adrenal gland or pheochromocytoma can also develop, with a small number becoming metastatic, meaning they spread to other parts of the body.
