Kim’s Story
I noticed sudden vision changes around the age of 14 and was diagnosed with VHL when I was 15. It took 12 months, and many doctors, for me to get a diagnosis. My family were …
VHL UK Ireland
Sheela’s Story
My story has lots of ups and downs, but more importantly I wanted to show what living with VHL has been like for me. It has taken me weeks to …
Pre-implantation genetic testing for monogenic disorders (PGT-M)
Pre-implantation genetic testing for monogenic disorders (PGT-M) – Previously Pre-implantation genetic diagnosis (PGD). VHL, HLRCC and BHD are all approved conditions. Note BHD is not in the online list but …
VHL Awareness Month – Prof. Eamonn Maher Blog
May 2023 includes the 30th (Pearl!) anniversary of the identification of the VHL gene! This landmark event marked the culmination of a many years of research but was also the …
Charity Ball to be held to support VHL UK/Ireland and Cancer52
VHL UK/Ireland and Cancer52 have been selected as the chosen charities for this years Vixstar Charity Ball. The event will be held on Saturday 30th September in Peterborough and expects …
Belzutifan/Welireg Appraisal – Your Charity Needs YOU!
As you are aware, we are working to try to get NHS funding approval for belzutifan/welireg, and we need your help, please! The NICE appraisal committee needs to know just …
