Mar 11, 2025
On February 28th 2025, we marked Rare Disease Day, a time to raise awareness and support for the 300 million people worldwide living with rare conditions. This year’s theme, Stronger Together, highlighted the power of community in driving change. To celebrate, the...
Jan 25, 2025
On Saturday 11th January, some of the trustees of XLH UK came together in London to reflect on everything that had happened in 2024 and a great year for our community! We celebrated the progress made in raising awareness and supporting the XLH community,...
Jan 14, 2025
Research shows impact of XLH on quality of life XLH UK have collaborated with Triangulate Health to scientifically verify the research evidence regarding the impact of XLH on the lives of XLH patients and those of their families. Titled ‘Exploring Perspectives...
Nov 19, 2024
Resources are available if you are starting on burosumab The NHS has now published guidelines so that specialists can prescribe burosumab to UK adults with a diagnosis of XLH. You can watch the recording of a webinar that XLH UK ran, to provide more information about...
Sep 26, 2024
XLH Alliance Members Meeting 2024 Post from Sarah Mitson: On the weekend of 21st September, I had the pleasure of attending the International XLH Alliance meeting as the XLH UK representative. Our very own Oliver Gardiner is the Co-Chair of IXLHA and was...
