BENEFITING: VHL ALLIANCE
What is VHL?
Von Hippel-Lindau (or VHL) is a genetic disorder in which patients battle a series of tumors throughout their lives. It is caused by a flaw in a gene, the VHL gene, located on the short arm of chromosome 3, which regulate cell growth.
It's a rare condition, about one in every 32,000 people are affected by VHL, and the condition is different for each patient.
+ Approximately 10,000 people are diagnosed with VHL in the U.S. and 200,000 worldwide.
+ As a genetic disorder, VHL is primarily inherited from a parent, yet 20 percent of patients are first in the family (like Sarah)
Why donate to the VHL Alliance?
The VHL Alliance (or VHLA) is a non-profit organization dedicated to research, education and support to improve awareness of diagnosis, treatment and quality of life for those affected by VHL.
VHLA is a preeminent resource and clearing house for doctors, patients and caregivers, providing guidelines for screening and treatment as well as a toll-free hotline and online support communities. The organization works to establish Clinical Care Centers, or hubs, in the U.S. and internationally, so patients with VHL can see a team of doctors at a single hospital for their individual needs.
Dontate today to help us reach our goal!