Aug 17, 2026
XLH UK is delighted to welcome Cat Price as our new charity manager. Cat has been supporting voluntary sector organisations to achieve their goals since 2017, following 15 years of experience in NHS management. Most recently she has been running PRDA, a...
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 15, 2025
We’re delighted to share an incredible fundraising achievement from Holly Knight, who has now completed three half marathons for XLH UK this year! Earlier in the year, we celebrated her completion of the Gloucester Half Marathon, and she’s since gone on to...
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...
Nov 9, 2025
We’re sending a huge congratulations to Mhairi Duncan for completing the Lisbon Marathon on 25th October 2025, raising funds and awareness for XLH UK in the process. Mhairi took on this challenge not only as a personal milestone but to support the community. And...
