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.

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Von Hippel-Lindau (VHL) Resources

More members stories

Latest Member Stories

living with vhl

by alex974 published 4 days ago
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They removed a kidney a year ago after breast cancer... I live today with my family as support. I know it's hard but it's better not to think too m...

My history with Von Hippel-Lindau syndrome

by 1121 published 5 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...

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