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 …
News & Updates
Belzutifan in the UK Update – 17 December 2022
Since June 2021, VHL UK/Ireland has been working with NICE (National Institute for Health and Care Excellence) and Merck/MSD (the pharmaceutical company which has developed belzutifan (Welireg), to assist in …
UK Registry for VHL disease and other Inherited kidney tumour syndromes
VHL UK Ireland has granted £60,000* to Eamonn Maher, Head of the Department of Medical Genetics to establish a national registry for VHL disease and related disorders. After a rigorous …
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 …
100,000 genomes project VHL study
VHL UK Ireland has granted £60,000* to Eammon Maher, Head of the Department of Medical Genetics for this study which is paramount to the understanding of genetic conditions such as …
Published Articles from the 100,000 genomes project VHL study
The VHL Alliance published in its Summer 2022 Newsletter an overview: ALTERATIONS IN THE ELOC GENE MAY CAUSE VHL DISEASE By Dr. Amit Tirosh, Sheba Medical Center. “The diagnosis of …
