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 …
#vhlawareness
Wear blue for VHL day
As part of VHL Awareness Month we come together celebrating VHL with wearing blue to support and raise awareness to those who suffer with the disease. On Saturday 10th May …
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 …
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 …
Eurordis Membership
We are pleased to announce that VHL UK/Ireland has recently become a member of Eurordis – Rare Diseases Europe https://www.eurordis.org/. It gives us visibility in Europe as the UK and …
