Introducing the New VHL Warrior Merchandise Range
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 …
News & Updates
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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, …
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announce that on the 5th September 2024, the National Institute of Health & Care Excellence (NICE) published its Final Draft Guidance for NHS England with …
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 …
SMC Approval of belzutifan(Welireg) for selected VHL Patients
VHL UK/Ireland is delighted to hear the wonderful news from the SMC today, that certain qualifying VHL patients in Scotland will be the first in Europe to be able to …
Belzutifan Ireland – NCPE assessment
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 …
Study participants needed – CAN YOU HELP?
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 …
Open positions: Chair of Trustees & Secretary
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 …
Celebrating VHL Awareness Month 2025💙📈
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 …
Legacy Donations
This text has been added to the bottom of our donate page We have had several requests for how to handle legacy donations. Please email us to discuss further. The …
Wear blue for VHL day
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 …
