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

A life not so simple

by blabla55 published 8 months ago

Hello all, I am a teenager looking for answers or simply trying to understand...
My grandfather died of VHL disease before I was born... Then my f...

My history with Von Hippel-Lindau syndrome

by 1121 published 9 months ago

I am 31. When I was 23, I had frequent headaches and suffered fainting spells. Once I ran to ER, where I was told I had a brain tumor. Unfortunatel...

Partners and Patient Groups