XLH UK supports those with X-linked hypophosphataemia and related disorders.

Find out more about starting burosumab as an adult with XLH

Rare Disease Day 2025: Stronger Together

Rare Disease Day 2025: Stronger Together

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...

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XLH UK strategy day in London

XLH UK strategy day in London

  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,...

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Research Paper on XLH Quality of Life

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...

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