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...
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...
Aug 11, 2024
Exciting News: XLH and other Rare Hypophosphatemias included in Genomics England's Generation Study We are thrilled to announce the launch of the Generation Study, which will test newborns for changes in genes linked to over 200 rare genetic conditions. The research...
Jul 14, 2024
Beyond the patient – understanding the spillover effects of XLH. XLH UK is pleased to have collaborated with researchers on an original study which is the first to identify the impacts of XLH beyond the patient alone. The study was initiated and funded by Kyowa...
Feb 25, 2024
In 2023, XLH UK collaborated with Joe Bonnell, a photographic ethnographer, and filmmaker Rachel Lewis to capture the stories of some of the XLH community. I sat down with Sarah Mitson, Chair of XLH UK, to explore the motivation behind commissioning these powerful...
