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VHL Alliance

The VHL Alliance (VHLA) is a 501c3 non-profit organization founded in 1993 by three families with VHL to share experiences, learn from one another, support one another, and help the doctors understand and treat VHL, and improve life for patients. Today, the VHL Alliance is the preeminent resource and clearinghouse of patients, caregivers, researchers, and the medical community. VHLA is connected with approximately 90% of all diagnosed VHL patients throughout the world.


The VHL Alliance (VHLA) is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL.

1208 VFW Parkway, Suite 303
Boston, Massachusetts

Last updated: October 23, 2019