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

Hi all 👋11 weeks to go until the 2026 VHL Patient Day! As a reminder:VHL Patient Day 2026:📍Holiday Inn Birmingham Airpor...
29/08/2026

Hi all 👋

11 weeks to go until the 2026 VHL Patient Day! As a reminder:

VHL Patient Day 2026:
📍Holiday Inn Birmingham Airport – NEC, Birmingham
📆 Saturday 14 November 2026
⏱️10:00am–4:30pm
🚗 Free on-site parking available!

We are pleased to announce that a discount has been agreed with the venue. To redeem, please make your booking via phone (0800 40 50 60) and quote the code “VHL” for £50 off the room rate. However, more competitive rates may be available on an online booking company such as booking.com , so we advise you compare rates before booking. Prices can fluctuate, even daily, to match demand.

We can’t wait to see you all. Any questions please get in touch🩵

VHL Belzutifan Appraisal Ireland – Patient Call📣 EVERY MONDAY | 8PMWant to know what’s happening with the belzutifan app...
27/08/2026

VHL Belzutifan Appraisal Ireland – Patient Call

📣 EVERY MONDAY | 8PM

Want to know what’s happening with the belzutifan appraisal in Ireland and what you can do to help? Join our weekly patient call to stay informed 🩵

🩵 Save the Date: VHL Patient Day 2026! 🩵Join patients, families, healthcare professionals, and the VHL community for a d...
10/08/2026

🩵 Save the Date: VHL Patient Day 2026! 🩵

Join patients, families, healthcare professionals, and the VHL community for a day filled with:
✨ Information and updates
🤝 Support and connection
💬 Opportunities to share experiences
💙 A chance to meet others who understand life with VHL

🎟️ Have you booked your tickets yet?
Make sure you save the date and join us for this important community event.

BOOK HERE: https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

📅 Saturday 14 November 2026
⏰ 10:00am – 4:30pm
📍 Holiday Inn Birmingham Airport – NEC, Birmingham
🚗 Free on-site parking available

📣 We want to hear from youOur new Chair, Mark Lodge, is developing the charity’s strategy for the next five years, and b...
04/08/2026

📣 We want to hear from you

Our new Chair, Mark Lodge, is developing the charity’s strategy for the next five years, and before that work begins, he wants to hear directly from the people who matter most – you.

Whether you’re living with VHL, caring for someone who is, or supporting a loved one, we’d really value your thoughts.

What does VHL UK/Ireland do well?
What could we do better?
What support is missing?
What gives you hope, or what worries you most about the future?

There are no right or wrong answers. Your feedback—positive, constructive or somewhere in between—will help shape the direction of the charity.

To encourage honest feedback, Mark is asking that comments are sent to him confidentially:

📧 [email protected]

Every message will be read and considered as we develop our strategy ahead of this year’s Patient Day.

Thank you for helping us build a stronger charity, together. 💙

09/07/2026

Have you nominated VHL UK/IRELAND yet? If not, not to worry as there is still time! It only takes about 30 seconds to nominate and the charity would benefit massively.
This is a quick video demonstrating how you vote.

Link to vote is below 👇
https://movementforgood.com

Being a VHL Warrior means showing courage, resilience, and strength every single day. 💪✨What does being a VHL warrior me...
08/07/2026

Being a VHL Warrior means showing courage, resilience, and strength every single day. 💪✨

What does being a VHL warrior mean to you?
Let us know in the comments below 👇

June monthly donations - thank you 🩵
07/07/2026

June monthly donations - thank you 🩵

🩵Patient Day for VHL UK/Ireland🩵We’re coming together for a special day dedicated to individuals and families affected b...
05/07/2026

🩵Patient Day for VHL UK/Ireland🩵

We’re coming together for a special day dedicated to individuals and families affected by VHL, HLRCC and BHD. Along with healthcare professionals and supporters.

📅 Date: 14/11/26
⏱️Times: 10:00AM - 4:30PM
📍 Location: Birmingham
🏨 Venue: Holiday Inn Birmingham Airport - NEC, Birmingham

This will be a welcoming space to share experiences, gain valuable information, and build a stronger, supportive community.

Hear from leading clinical experts, including Professor Eamonn Maher and Dr Scott Shepherd, with sessions covering topics such as Belzutifan and the mental aspects of living with a chronic condition. You’ll also have the opportunity to meet and connect with others in the VHL community.

Tickets are now available – we’d love to see you there.

👉 Book your place:
https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

Address

47 Tiln Lane, Retford
Nottingham
DN226SN

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