VHL Alliance

We all have a VHL gene. One in 36,000 individuals will experience VHL gene mutation which leads to tumor growth in up to 10 different areas of the body including the brain, eye, and spinal cord as well as the kidneys and pancreas. Some of these tumors are cancerous, some are not, but all are injurious.

An Estimated 10,000 Americans manage their VHL through annual surveillance guidelines that include MRI scans, invasive surgical procedures, and other treatments. There is no cure.

The VHL Alliance is the world’s leading VHL patient advocacy organization serving families with lived experience, the clinical experts who treat them, and the researchers who explore new breakthroughs.

Our Signature Programs include:
**Educational Materials – Handbooks, Digital Library, Blog and Newsletters
**Nationwide VHL Clinical Care Network of over 40 affiliates and growing
**In Person Connection Events – International VHL Medical Symposium and VHL Family Meeting
**Largest Funder of VHL Research – Private Grant Funding and Advocacy for U.S. Federal VHL Research Dollars