The VHL Alliance
The VHL Alliance is dedicated to RESEARCH, EDUCATION, and SUPPORT to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.
Our vision is Curing Cancer through VHL. The VHL gene is in all of us, helping to suppress the growth of tumors. Those with a flaw in this gene are prone to develop tumors throughout their bodies. Researchers are racing to identify and control the pathways that allow tumor growth in VHL and other cancers. Their progress provides hope for all of us by Curing Cancer through VHL.
Founded in 1993, the VHL Alliance (VHLA) is the world’s leading organization supporting von Hippel-Lindau Syndrome. We are a 501(c)3 nonprofit dedicated to improving the lives and optimizing the treatment of those affected VHL while aggressively pursuing a cure.
Condition Awareness & Advocacy
Here is a list of conditions this partner raises awareness and advocacy for:
Patient Worthy Posts on VHL
Patient Worthy’s Award-Winning Podcast Returns: Spotlight on Von Hippel-Lindau Disease
After around a 10-month hiatus, we are excited to announce that Patient Worthy’s award-winning podcast “Wait, How Do You Spell That? A Rare Disease Podcast”
VHL Patient Ashley Benefits from Treatment with Belzutifan
Ashley Colburn began losing her vision in childhood and became completely blind at fourteen years old. You see, Ashley has a rare inherited disorder
Von-Hippel Lindau Disease: Finding Hope in a Clinical Trial
“I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do
A New Care Center for Von Hippel-Lindau Disease Has Been Named by the VHL Alliance
The VHL Alliance has just recognized Loyola Medicine as a new VHL Clinical Care Center. Von Hippel-Lindau (VHL) disease patients require multidisciplinary care for their
A Discussion of von Hippel-Lindau Disease Thirty Years After Discovery
CURE® recently conducted an interview with von Hippel-Lindau (VHL) patient Joseph Heisler and his mother, Marirene. Joseph’s father was diagnosed thirty years ago with the
Belzutifan May Help Patients with Von Hippel-Lindau Disease
According to a recent article, a new study shows a daily oral dose of Belzutifan may keep patients diagnosed with von Hippel-Lindau disease from needing
