Welcome - Von Hippel-Lindau (VHL) Community

What is Von Hippel-Lindau (VHL) ?

Von Hippel Lindau (VHL) is a rare genetic cancer syndrome, an alteration in the VHL-tumor-suppressor gene, which puts the individual at increased risk of developing tumors in various organs throughout life.

Source: Participating patient organizations visible below

Von Hippel-Lindau (VHL) Resources

More members stories

Latest Member Stories

VHL Disease

by Konny published about 1 year ago

I received my diagnosis of disruption of the hypothalamic-pituitary axis 2 weeks ago and am totally shocked. Although I knew that something was wro...


by jason28 published about 1 year ago

Hello all. I'm 21 years old and I was diagnosed with VHL when I was 12. My sister, who is 23, also has it and my father as well.

So far, I hav...