Belzutifan – Frequently Asked Questions
These FAQs are published by VHL UK/Ireland in partnership with Dr Scott Shepard. Last Updated: September 2025 1. What is VHL? Von Hippel-Lindau disease (VHL) is a devastating, rare, life-long, …
News & Updates
Press News Releases
17/09/2024 NEWS SHOPPER “Bexley mum with Von Hippel-Lindau celebrates victory over new drug” 5/09/2024 VHL UK/reland “GAME-CHANGING DRUG, BELZUTIFAN (WELIREG), RECOMMENDED WITH MANAGED ACCESS FOR VON HIPPEL-LINDAU PATIENTS IN ENGLAND” 5/09/2024 …
GAME-CHANGING DRUG, BELZUTIFAN (WELIREG), RECOMMENDED WITH MANAGED ACCESS FOR VON HIPPEL-LINDAU PATIENTS IN ENGLAND
VHL UK/Ireland is pleased to announce that on the 5th September 2024, the National Institute of Health & Care Excellence (NICE) published its Final Draft Guidance for NHS England with …
Saturation Genome Editing-Francis Crick Institute press release
Researchers map the effects of all potential changes in key cancer gene Researchers at the Francis Crick Institute have mapped all the possible outcomes of changes to a tumour-suppressing gene …
UK Registry for VHL disease … Status Update June 7th 2024
Some of this Charity’s Grant Award funding went towards Huairen Zhang’s PhD studentship and the following article has now been published. Characteristics, aetiology and implications for management of multiple primary …
A Poem For Our Warriors 2023-2024
VHL UK/Ireland is excited to share ‘A Poem For Our Warriors’. The video consists of real VHL warriors and family members, all affected by the rare genetic condition. Featuring over …
