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

Rare Disease Day 2015

by RareConnect team published 2 months ago 2 comments

Rare Disease Day takes place on the last day of February each year.

The main objective of Rare Disease Day is to raise awareness amongst the gen...

VHL Disease

by Konny published 6 months ago 9 comments

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...