News

2026.10.03 Take a look around our new website. It is packed with loads of helpful features for patients, carers. clinicians and others who have a keen interest in all things “VHL” The menu bar is split into different “zones”- the key “zones” are: “What is VHL” which hopefully does what it says on the tin.…

The NCPE has updated their website this week with the outcome of its assessment of Belzutifan, which can be viewed here: Belzutifan (Welireg®). HTA ID: 25020 | National Centre for Pharmacoeconomics It says: “The NCPE recommends that belzutifan (Welireg®) not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments*. * Next…

VHL UK/Ireland is asking for your help with a new research study by Cardiff University. The study is called “The impact of a predictive genetic diagnosis in childhood on psychosocial experiences of adults with von Hippel-Lindau Syndrome (VHL)”. The research aims to understand how finding out about a VHL genetic diagnosis during childhood or teenage…

VHL UK/Ireland is a volunteer-led charity supporting individuals and families affected by von Hippel-Lindau Syndrome (VHL) and related rare genetic conditions. We provide information, peer support, advocacy, and fund vital research to improve lives. We are currently inviting applications for two exciting opportunities to join our charity and play a key role in shaping our…

May 2025 has been an incredible month for the VHL community! As we dedicated this month to raising awareness about Von Hippel-Lindau (VHL) disease, we witnessed an inspiring surge in social media engagement — with views skyrocketing by over 2,000%! This remarkable growth highlights the power of awareness, education and community support in making a…

As part of VHL Awareness Month we come together celebrating VHL with wearing blue to support and raise awareness to those who suffer with the disease. On Saturday 10th May 2025 multiple families/friends of VHL warriors wore blue and sent in photos to share. All VHL warriors family and friends who took part

Our next Annual General Meeting will be on Thursday 29th May. The agenda of this meeting will be added to our website & the committee meeting will follow on from this.

We’re excited to launch our brand-new VHL Warrior merchandise range – a bold collection of sweatshirts, t-shirts, and hats designed to help you show your support for the VHL community while raising vital funds for our cause. Featuring the new VHL Warrior logo, this collection represents strength, solidarity, and the incredible resilience of those affected by Von Hippel-Lindau (VHL) disease, Hereditary…