Welcome to the VHL UK/Ireland website
Patient Support and Advice, Funding Research and Public Education for
von Hippel-Lindau Syndrome (VHL) and similar genetic conditions.
What is VHL (von Hippel Lindau) disease?
Willem Dafoe Talks About VHL
Looking for information and support ?
Visit our VHL Disease Information and Support page for a list of quick links to affiliated support groups.
Visit our VHL Information Downloads to access our detailed fact sheets.
Latest News
UK Registry for VHL disease … Status Update March 1st 2024
March 1st, 2024 – A meeting of the “Inherited Renal Cancer Syndromes” Rare Disease Group of the RaDaR Registry was held recently and attended by …
Nick Mawdsley’s story
As a small boy growing up in the 1960s there was never any reason given why my mother, an ex-ballet dancer, was in a wheelchair. No one, including her …
Belzutifan Public (Update November 2023)
Belzutifan (Welireg) Update from NICE England: Wednesday 29th November 2023 Today, NICE published their initial findings from the first committee …
Random Quote
How can I fundraise for VHL UK/Ireland ?
There are many ways to raise essential funds for the charity, no matter how big or small it all helps us to reach our goal!
Whether it is a bake sale, sponsored half marathon, a night walk, a work place
“dress down” day, a charity coffee morning or a sky dive, please follow our
step-by-step guide below, which explains everything you need to know.