VHL UK/Ireland

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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

ARE YOU READY TO SHARE YOUR SCAR? 💪We all have a story to tell, a quote that keeps us going, and a scar that reminds us ...
24/10/2026

ARE YOU READY TO SHARE YOUR SCAR? 💪

We all have a story to tell, a quote that keeps us going, and a scar that reminds us just how strong we are✨

Want to get involved?
💬 Message us with:
✨ A quote or words you live by.
💙 A picture of your VHL scar

Every scar tells a story, and every story deserves to be heard. By sharing ours, we can raise awareness, support one another, and remind others living with Von Hippel-Lindau (VHL) disease that they are not alone. You don’t have to share everything — just what you feel comfortable with.

🩵 TICKET SALE CLOSES 26TH OCTOBER 🩵MEET THE SPEAKERS – VHL PATIENT DAY 2026! 🩵We’re delighted to introduce our fantastic...
22/10/2026

🩵 TICKET SALE CLOSES 26TH OCTOBER 🩵

MEET THE SPEAKERS – VHL PATIENT DAY 2026! 🩵

We’re delighted to introduce our fantastic speakers for VHL Patient Day 2026! ✨

Join us for a day of sharing experiences, learning, raising awareness and bringing our VHL community together.

- Meet our speakers -
🌟Dr Bernadett Kovacs
🌟Prof Eamonn Maher
🌟Dr Scott Shepherd
🌟Georgie Mosely

📅 Saturday 14th November 2026
⏰ 10:00am – 4:30pm
📍 Birmingham, UK

Whether you’re living with VHL, supporting a loved one, or passionate about raising awareness, this is an opportunity to connect, learn and feel part of our community 🥰

Ticket sales close in 5 days!
https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

⭐️ MEET THE SPEAKERS ⭐️Dr. Bernadett Kovacs our final speaker, she is a highly experienced neurosurgeon with 16 years of...
20/10/2026

⭐️ MEET THE SPEAKERS ⭐️

Dr. Bernadett Kovacs our final speaker, she is a highly experienced neurosurgeon with 16 years of dedicated expertise in treating cranial neurosurgical conditions, specializing in benign brain tumours and complex blood vessel conditions of the brain, such as brain aneurysms, arteriovenous malformations (AVMs), cavernomas, and dural arteriovenous fistulas.

Dr. Kovacs is currently the lead of the neuro-vascular service at University Hospitals Birmingham, Queen Elizabeth Hospital.

To bring the highest standard of safety to their patients, they completed advanced training across both Hungary and the United Kingdom. Their specialization in delicate neurovascular care is backed by a Royal College-approved fellowship in vascular neurosurgery which has been completed at the National Hospital for Neurology and Neurosurgery. Dr. Kovacs is Fellow of the European Board of Neurological Surgeons.
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Join us at our patient event on November 14th to hear from Dr. Kovacs & many others. For more information & to buy tickets, please visit;
https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

VHL Warrior went through surgery recently to remove a hemangioblastoma on the right cerebellar. He has bravely shared h...
19/10/2026

VHL Warrior went through surgery recently to remove a hemangioblastoma on the right cerebellar. He has bravely shared his scar today 🩵

We asked Tom what advice would he give others and he replied “Just be patient with yourself, take each day as it comes”

Rest up and take it easy Tom 🫶

Patient call | Tonight at 8pm VHL Belzutifan Appraisal Ireland
19/10/2026

Patient call | Tonight at 8pm
VHL Belzutifan Appraisal Ireland

🎉 THE COUNTDOWN IS ON — JUST 4 WEEKS TO GO! 🎉VHL Patient Day 2026 is fast approaching, and there’s still time to book yo...
17/10/2026

🎉 THE COUNTDOWN IS ON — JUST 4 WEEKS TO GO! 🎉

VHL Patient Day 2026 is fast approaching, and there’s still time to book your ticket!

✨ Make the most of your visit:
🎟️ Book your ticket now!
🏨 Stay at the venue and use discount code VHL when booking your room.
🚗 Enjoy free on-site parking!

📍 Holiday Inn Birmingham Airport – NEC, Birmingham

We can’t wait to bring our VHL community together for a special day of connection, support and sharing experiences. 🩵💙

Don’t miss out — book your place today!

⭐️ MEET THE SPEAKERS ⭐️Georgie Mosely – Founder/ CEO of Help Harry Help Others (HHHO)HHHO is specialist charity supporti...
13/10/2026

⭐️ MEET THE SPEAKERS ⭐️

Georgie Mosely – Founder/ CEO of Help Harry Help Others (HHHO)

HHHO is specialist charity supporting cancer patients around the Midlands with over a number of things from financial advice to navigating the PIP and Blue Badge journey, to emotional wellbeing

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Join us at our patient event in November to hear from Georgie Mosely & others. For more information & to buy tickets, please visit;
https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

⭐️ MEET THE SPEAKERS ⭐️Dr Scott Shepherd (Consultant at The Royal Marsden Hospital and Researcher at the Francis Crick I...
30/09/2026

⭐️ MEET THE SPEAKERS ⭐️

Dr Scott Shepherd (Consultant at The Royal Marsden Hospital and Researcher at the Francis Crick Institute)

Scott will talk about Belzutifan as a systemic treatment, and provide a reminder of the science of HIF2a inhibitors, as well as some real-life case studies of patients currently on treatment.

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Join us at our patient event in November to hear from Dr Scott Shepherd & others. For more information & to buy tickets, please visit;
https://www.eventbrite.com/e/vhl-ukireland-patient-support-day-2026-tickets-1992747329907

Address

47 Tiln Lane, Retford
Nottingham
DN226SN

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