XLH UK supports those with X-linked hypophosphataemia and related disorders.
Sign up for the 2026 Community Day here!
Insights on stiffness
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...
Celebrating award winning patient stories
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...
Research Paper on XLH 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 of People with XLH: Insights into Disease Impact, Daily...
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 is run by Genomics England who partner with the NHS to provide whole genome sequencing diagnostics....
New research released
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 Kirin...
Making the XLH Patient Stories
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...
International XLH Alliance Patient Group Meeting
The day before the 3rd International XLH Symposium took place in Dublin, we had a meeting of XLH patient groups from around the world, hosted by International XLH Alliance. Oliver Gardiner led several sessions as co-chair of XLH Alliance and trustees Sarah Mitson and...
3rd International XLH Symposium
The 3rd International XLH Symposium took place on the 1st July at University College, Dublin. The final session of the day was ‘Global Health Disparities and Access to Care’, where Oliver Gardiner presented results from the IXLHA International Patient Survey. There...
Status Update
Hi all, there have been lots of developments in the last 4 months that I am keen to share with you. Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on experiences and challenges that adults with XLH are faced...