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 …
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 …
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 …
VHL Awareness Month – May 2021
Join us in May as we celebrate globally VHL Awareness Month. VHL UK/Ireland are encouraging patients, families and supporters to get involved in a number of ways, see below for …
VHL Screening Guidelines in the UK
Read the guidelines from 2018 on VHL Screening presented by Dr Richard Sandford, Eamonn Maher and Fiona Lalloo. VHL should be suspected in individuals with or without a family history …
