News
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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announce that on the 5th September 2024, the National Institute of Health & Care Excellence (NICE) published its Final Draft Guidance for NHS England with a positive recommendation for the use of belzutifan (Welireg) under a Managed Access. Agreement (MAA).Link: Final Draft Guidance for NHS EnglandLink: See All Project Documents Von Hippel-Lindau disease (VHL)…
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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 called VHL, the first step in a huge research endeavour to unpick the outcomes of tens of thousands of genetic variations in genes associated with cancer.…
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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 renal tumours: a systematic review Avgi Andreou, Huairen Zhang, Rupesh Bhatt, James Whitworth, Bryndis Yngvadottir, and Eamonn R. Maher
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Annual General Meeting 2024
The AGM is now scheduled for 13th June,2024 at 7pm followed by the Committee Meeting. The AGM will elect the committee/trustees and the Committee Meeting will appoint Chair, Secretary, Treasurer and other roles.
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An insight into living with VHL
Hi everyone, Frankie here 🙂 The other week I had the pleasure of chatting with Professor Marion McAllister (Senior Lecturer in Genetic Counselling & Course Director, MSc in Genetic Counselling at Cardiff University). This was recorded to show within the ‘Patient Perspectives’ part of their course. To give the students an insight into life with…
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Coping with VHL: The Unseen Struggles
Coping with VHL: The Unseen Struggles Written by Lily Meyers A diagnosis of any kind can be shocking. It takes time to process, but a rare disease like von Hippel-Lindau syndrome (VHL) may need even more time to understand fully. VHL can affect much of the body and brain, which impedes mobility, memory, vision, and…
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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 freely access the ‘game-changing’ new drug, belzutifan (Welireg), via the NHSScotland. This is a truly significant day, as belzutifan (Welireg) fulfils a huge unmet need…
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Charity Ball held in support of VHL UK/Ireland & Cancer 52
Saturday 30th September saw Vixstars Events host a charity ball at Holiday Inn in Peterborough. With nearly 250 attendees the night was close to being a sell-out & great fun was had by all – some even asking if one can be organised again next year! Vicky, Frankie & Roxanne with singer Nicole Lawrence The…
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VHL UK/Ireland Patient/Carer belzutifan (Welireg) Survey June 2023- Summary
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VHL Awareness Month – Prof. Eamonn Maher Blog
May 2023 includes the 30th (Pearl!) anniversary of the identification of the VHL gene! This landmark event marked the culmination of a many years of research but was also the starting point for much more research to unravel the function of the VHL gene product and that research eventually led to the development and a clinical trial…