Roswell Park Is First Site in Region Named a Resource for Patients With Rare Genetic Disease

Living with a genetic disorder that calls for regular monitoring, appropriate treatment and emotional support calls for a multidisciplinary team that works together to coordinate patient care. Those diagnosed with von Hippel-Lindau (VHL) disease have a resource for that complete and coordinated care in Roswell Park Comprehensive Cancer Center, which was recently named a VHL Clinical Care Center by the VHL Alliance.

“We are honored to partner with Roswell Park Comprehensive Cancer Center in providing the first VHL Clinical Care Center for patients and families in Western New York. Roswell Park’s reputation for excellence and dedication to providing holistic, coordinated and knowledgeable VHL care make them an invaluable resource for the VHL community,” says Chandra Clark, MEd, VHLA Executive Director. “We look forward to the life-changing impact that this collaboration will make in the lives of patients and families affected by VHL.”

A rare hereditary condition, VHL occurs as tumors that can appear in up to 10 areas in the body. While all people are born with two copies of the VHL gene, an altered copy can lead to the growth of cysts and tumors. The disease appears differently in each person — tumors can grow unpredictably over time and cause life-changing problems due to location and size. Though most tumors are noncancerous, patients with VHL have a high risk of developing kidney cancer as well as tumors of the adrenal gland and pancreas.

Because VHL can affect so many different organ systems, it takes numerous experts across multiple disease sites and disciplines to keep track of a patient’s care plan. Roswell Park takes this comprehensive and personalized approach. A patient navigator helps guide patients through the steps needed for attentive surveillance to monitor any new or changing tumors, ensuring that those patients are seen by the necessary specialists.

“VHL is complex, and our staff at Roswell Park are well equipped to provide the best care possible to these patients,” says Eric Kauffman, MD, a urologic oncologist at Roswell Park. “We are proud to be able to provide these resources — from our clinical genetics service to kidney cancer experts — for anyone who finds themselves diagnosed with the disease.”