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 clearing house for patients, caregivers, researchers and the medical community. VHLA is connected with approximately 90% of all diagnosed VHL patients throughout the world.