Annual General Meeting 2024
The AGM is now scheduled for 13th June,2024 at 7pm followed by the Committee Meeting. The AGM will elect the committee/trustees and the Committee Meeting will appoint Chair, Secretary, Treasurer …
News & Updates
Family planning with VHL, HLRCC and BHD – what you need to know
Foreword: although the following article discusses family planning options for VHL syndrome, the same processes and treatments also apply to HLRCC (FH gene) and BHD (FLCN gene). Please consult a …
UK Registry for VHL disease … Status Update March 1st 2024
March 1st, 2024 – A meeting of the “Inherited Renal Cancer Syndromes” Rare Disease Group of the RaDaR Registry was held recently and attended by RDG group members including Prof …
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 …
