We were thrilled to welcome over 30 attendees to our VHL Patient Support Day, held at the Mercure Sheffield Parkway Hotel this May. It was a day filled with connection, shared stories, expert insight, and a genuine sense of community among individuals and families affected by Von Hippel-Lindau (VHL) disease.
The day opened with a warm welcome from VHL UK/Ireland, followed by a moving personal story from Emily Hughes, who shared her journey with VHL. Attendees then heard from Dr. Sam O’Toole on the endocrine aspects of the condition, providing valuable clinical insight into the challenges many face.
After a short break, Kayleigh Stephens bravely shared her own experience with VHL, followed by an informative session from Dr. Scott Shepherd on Belzutifan, a new and important treatment that is helping improve quality of life for many.
In the afternoon, we heard from Mark Lodge, who offered a heartfelt perspective as a VHL carer, and Kathryn Chapman, who shared advice and guidance around wellbeing and resilience.
We wrapped up the day with thanks from the VHL UK/Ireland team and some informal chat time — a chance for attendees to connect, reflect, and build support networks.
Why These Days Matter
Our Patient Support Days are about more than just information. They’re about empowerment, togetherness, and ensuring that nobody facing VHL, HLRCC or BHD feels alone. Whether newly diagnosed or living with the condition for years, our events create a space where lived experience and expert advice come together.
Thank you to everyone who attended, spoke, or helped make the day possible — and to those who continue to support our work.
Interested in joining our next support day?
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