VHL UK/Ireland

VHL UK/Ireland VHL,HLRCC and BHD are genetic forms of cancer. VHL UK/Ireland supports patients who may battle tumours throughout their lives and raises funds for research

VHL UK/Ireland supports those affected by genetic conditions Von Hippel Lindau Disease, Birt-Hogg-Dubé and Hereditary Leiomyomatosis & Renal Cell Cancer. Private patients group: www.facebook.com/groups/vhl.uk.ireland

📣 IMPORTANT INFORMATION 📣VHL warrior Barry and his family are raising awareness speaking on the radio Tuesday morning ab...
07/06/2026

📣 IMPORTANT INFORMATION 📣

VHL warrior Barry and his family are raising awareness speaking on the radio Tuesday morning about VHL disease and how it affects them on a daily basis! There will also be discussions on the recent news - Following the recent disappointing announcement by the NCPE that belzutifan “not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments*”

📆 When: Tuesday 9th June 2026, between 10 and 11 am
📻Where: RTE Radio 1 – Today with David McCullagh

First of all how is it the end of May already?! 😱Second of all, we are ending VHL AWARENESS MONTH with donations over £1...
31/05/2026

First of all how is it the end of May already?! 😱

Second of all, we are ending VHL AWARENESS MONTH with donations over £1K 🩵

From everyone at the committee we just want to thank everyone who got involved this year, sharing their stories, raising awareness, celebrating birthdays - It means so much to every VHL warrior 👏

Rad shares his story fighting VHL “I believe that living with VHL is a unique experience, and I remain dedicated to my...
30/05/2026

Rad shares his story fighting VHL

“I believe that living with VHL is a unique experience, and I remain dedicated to my charity work and to living a full, adventurous life”

Read Rad’s full story here - https://vhl-uk-ireland.org/rad-tingles-story/

29/05/2026

This is the sound the social media co ordinators hear when we get sent videos of supporters running the marathon for all VHL warriors.

Your doing amazing sweetie 👏

If you have a upcoming fundraiser for VHL, please remember to either email us or DM us the information 🩵

27/05/2026

We appreciate everyone who takes part in VHL activities 🩵

So, What Causes VHL?

* VHL is caused by a mutation in the VHL gene, which normally helps regulate cell growth and prevent tumors.
* It follows an autosomal dominant inheritance pattern — if one parent carries the mutation, each child has about a 50% chance of inheriting it.
* Around 20 % of cases result from new (spontaneous) mutations rather than inherited ones

A huge congratulations to George for completing the marathon in this heat may I add! You have raised over £3k for Charli...
24/05/2026

A huge congratulations to George for completing the marathon in this heat may I add! You have raised over £3k for Charli, his wife and daughter, Seali who both have VHL disease.

Thank you 🩵

🩵MAY IS VHL AWARENESS MONTH🩵This month, we’re helping raise awareness for Von Hippel-Lindau (VHL) disease — a rare lifel...
24/05/2026

🩵MAY IS VHL AWARENESS MONTH🩵

This month, we’re helping raise awareness for Von Hippel-Lindau (VHL) disease — a rare lifelong genetic condition that affects approximately 1 in 36,000 births.

VHL can cause blood vessel tumours to develop in up to ten areas of the body, with tumours being either benign or cancerous. The average age of diagnosis is just 25 years old, highlighting the importance of awareness, education, and early detection.

By sharing information, supporting organisations, and starting conversations, we can help make a difference for individuals and families living with VHL

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47 Tiln Lane, Retford
Nottingham
DN226SN

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