VHL Alliance (VHLA, 1993):

the "international" US VHL Patient Organization with permanent professional staff.

"The pre-eminent resource for patients, caregivers, researchers, and the medical community... Central to patient care is their VHL Handbook: What You Need to Know About VHL and the Active Surveillance Guide. VHLA has funded millions for VHL research. VHLA also offers a comprehensive support in the US (and internationally).

A 501(c)(3) non-profit
1208 VFW Parkway, Suite 303
Boston, MA, USA, 02132