Study participants needed – CAN YOU HELP?
VHL UK/Ireland is asking for your help with a new research study by Cardiff University. The study is called “The impact of a predictive genetic diagnosis in childhood on psychosocial …
Celebrating VHL Awareness Month 2025💙📈
May 2025 has been an incredible month for the VHL community! As we dedicated this month to raising awareness about Von Hippel-Lindau (VHL) disease, we witnessed an inspiring surge in …
Nick Mawdsley’s story
As a small boy growing up in the 1960s there was never any reason given why my mother, an ex-ballet dancer, was in a wheelchair. No one, including her many …
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 …
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 …
