VHL Alliance
The VHL Alliance exists to empower, educate, and encourage families experiencing VHL. Approximately 10,000 Americans have VHL with 80% inheriting it from a family member and 20% being first in family. The VHLA recognizes 40 VHL Clinical Centers of Excellence nationwide to provide coordinated care and advance VHL research. VHL Alliance Resources found here.
About VHL
Everyone has a VHL gene. When it is mutated from this genetic condition, the body’s ability to suppress tumors goes away. For a lifetime, people with VHL will experience cancerous and/or noncancerous growths in multiple areas of the body. There is no cure. Annual surveillance and numerous surgeries are the predominant treatment. A promising new drug therapy provides hope, however, VHL continues to be a highly disruptive and life-altering condition.
