Spanish Language Version of Pioneering Patient History Study Launched

In In The News by Barbara Jacoby

Source: VHL Alliance


Information brings researchers one step closer to Curing Cancer Through VHL

The VHL Alliance’s launch of a Spanish language version of its breakthrough patient history study brings the VHL community and researchers one step further to finding a Cure for Cancer through VHL.

Developed in collaboration with NORD (the National Organization of Rare Disorders), with input from the National Institutes of Health’s Global Rare Disease Registry, MyVHL was the first of its kind, patient-driven registry designed to help researchers and clinicians in their quest for a cure for von Hippel-Lindau. The registry supplements existing clinician-driven studies and consolidates patient information from around the world, making it independent of geography or specific mutations. With the addition of a Spanish language version, the registry is immediately accessible to Spanish-speaking patients and researchers in the US and globally.

The von Hippel-Lindau gene regulates tumor growth. Those with a mutation in the gene may suffer from unpredictable growth of tumors throughout their lifetime.

“Understanding the role played by this gene offers a key to finding a cure for cancer and other diseases. In fact, a dozen drugs currently used to treat kidney cancer are direct outcomes of research into von Hippel-Lindau disease. Developing a broad, patient-driven data base will provide us with important clues for solving this puzzle,” said Ilene Sussman, Executive Director of the VHL Alliance.

The study complements VHLA’s growing research grant program, which this year has received a record number of grant proposals.

About the VHL Alliance

The VHL Alliance (VHLA) is the preeminent resource and clearinghouse for those affected by von Hippel-Lindau disease, including patients, caregivers, researchers, and the medical community. VHLA is a 501(c)(3) non-profit organization founded in 1993, which is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL. VHLA is the leading funder of VHL research, funding $2 million in grant to support studies designed to find a cure. The VHL Alliance’s vision is Curing Cancer through VHL.