St. Jude recognized as clinical care center for rare von Hippel-Lindau syndrome

Picture of hospital campus with blue sky.

St. Jude has been designated as a von Hippel-Lindau Clinical Care Center by the VHL Alliance.

St. Jude Children’s Research Hospital has been designated as a von Hippel-Lindau Clinical Care Center by the VHL Alliance. St. Jude is the first and only VHL Alliance-recognized Clinical Care Center dedicated solely to children.

Von Hippel-Lindau (VHL) syndrome is a rare genetic condition that can cause tumors in areas of the body that contain blood vessels, including the brain, spinal cord, eye and inner ear. These tumors can be benign or cancerous and can cause serious complications, such as blindness, hearing loss and even loss of life. Children with von Hippel-Lindau syndrome are at risk of developing multiple types of tumors during their lifetimes. VHL is hereditary, which means it can be passed from parents to their children. The severity of the condition and the affected body areas can vary from person to person, even within the same family. The syndrome is rare-about 1 in 30,000 people has VHL.

“At St. Jude, we are committed to providing outstanding holistic, coordinated care for children with von Hippel-Lindau syndrome,” said Regina Nuccio, senior genetic counselor in the hospital’s Division of Cancer Predisposition. “We have genetic counselors and a wide variety of pediatric specialists who provide ongoing VHL tumor surveillance and meet the treatment needs of our patients. We also provide emotional health screening and help coordinate care with our patients’ local primary care physicians.”

VHL is one of many different cancer predispositions for which St. Jude has expertise and provides care. Doctors, nurses and genetic counselors in the Cancer Predisposition program work together with families to set up early detection, active surveillance and appropriate treatment for children with genetic diseases such as VHL. The team also collaborates with scientists to find new and better ways to help children who have a higher-than-normal risk of getting cancer.

“It has been meaningful to work with the Cancer Predisposition team at St. Jude in obtaining this designation,” said Kelsey Marx, a St. Jude employee and the VHLA liaison for the hospital’s VHL Clinical Care Center. “As a patient with VHL myself, I understand deeply the need for high-quality, coordinated care across multiple specialties. It is important for the community to know that St. Jude is providing this for children with VHL and other cancer-causing genetic disorders.”

“We are honored to partner with St. Jude Children’s Research Hospital in providing the first VHL Clinical Care Center exclusively for pediatric patients,” said VHLA Executive Director Chandra Clark, MEd. “The longstanding commitment of St. Jude to providing high-quality support and care for pediatric cancer patients is remarkable. We look forward to the life-changing impact that this collaboration will make in the lives of children and families affected by VHL.”

/Public Release. The material in this public release comes from the originating organization and may be of a point-in-time nature, edited for clarity, style and length. View in full here.