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Von Hippel Lindau Comprehensive Care Clinic

Von Hippel Lindau (VHL) is a condition that affects 200,000 people nationally, placing them at increased risks for certain types of tumors and cancer. Commonly associated tumor types include hemangioblastomas if the brain and spine, kidney cancer, pheochromocytomas, retinal angiomas, pancreatic tumors and other tumors throughout the body. The VHL Alliance has designated Huntsman Cancer Institute as a VHL Care Center, indicating we have the clinicians, imaging, and surgical expertise to best treat VHL patients.

Huntsman’s VHL Comprehensive Care Clinic aims to provide an integrated approach to VHL care. Oftentimes VHL patients are followed by several different specialists which can result in multiple appointments and conflicting recommendations.  The HCI VHL Comprehensive Care Clinic will provide a central hub to ensure patients receive all of the screening and treatment that they need as efficiently as possible. Our specialists meet and communicate on a regular basis to ensure that VHL care and treatment are planned with a big picture view of the patient’s health and personal life.

HCI utilizes recommended screening guidelines to care for people affected by VHL.

The VHL Comprehensive Care Clinic will also facilitate patients’ participation in research and clinical trials. The Cancer Genetics Study and VHL Alliance’s GCIP Databank are two examples of research opportunities for patients and families with VHL.

If you or a family member think you may have VHL and are looking to establish surveillance and care, please contact our clinic at (801) 587-9555. Any questions can also be directed to VHLClinic@hci.utah.edu, which is staffed by a genetic counselor and genetics nurse.