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 …
VHL UK Ireland
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 …
Notice: Annual General Meeting will be on Thursday 29th May
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 …
