The VHL Alliance (VHLA, vhl.org
) is the preeminent resource and clearinghouse of patients, caregivers, researchers, and the medical community, and is connected with approximately 90% of all diagnosed VHL patients throughout the world. VHLA is a 501c3 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.
VHL, or von Hippel-Lindau disease, is a genetic form of cancer. VHL patients battle a series of tumors, in up to ten organs, throughout their lives. The VHL gene controls the major feeding pipeline of every tumor. Curing VHL is one step closer to curing many other forms of cancer.
The VHL Alliance is a leading funder of VHL research with over $1.6 million granted to support studies designed to find a cure. While these funds have not yet uncovered an effective pharmacological treatment for VHL, the supported research has resulted in approval of multiple cancer drugs for other cancers including kidney and breast cancers.