May 18, 2026
The RUDY study has been looking at stiffness in adults with XLH — where it shows up in the body, and whether burosumab helps in everyday life. So far, we’ve learned that: • People on burosumab often feel less stiff, especially in their shoulders and wrists (which...
Dec 4, 2025
Award recognition for XLH UK patient stories! We are excited to share that our patient stories about the impact of XLH on quality of life have been recognised as best in class. Our researchers Joe Bonnell and Rachel Lewis were celebrated for the XLH UK research at the...
Oct 25, 2025
To make treatment easier and safer, burosumab will soon be available in a Pre-Filled Syringe (PFS) across the UK, for adult and children patients. The move to pre-filled syringes needs to happen in a careful and responsible way, because the existing stock of...
Aug 13, 2025
We are pleased to share with you a new patient story in which we hear from Amy, who opens up about the personal choices she made when starting her family. Amy has XLH and, after careful consideration, chose IVF to ensure that her two daughters would not carry the XLH...
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,...
