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

Find out more about starting burosumab as an adult with XLH

Community Day 2025

Community Day 2025

We are excited to announce that the next XLH UK Community Day will take place on Sunday 1st June 2025. You can now register for the event here. Following the success of last year’s event, we’re returning to the National Conference Centre, Birmingham - a fantastic...

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Holly runs the Gloucester Half Marathon for XLH UK

Holly runs the Gloucester Half Marathon for XLH UK

We’re sending huge congratulations to Holly Knight, who completed the Gloucester Half Marathon on 30th March 2025 in support of XLH UK! This cause is a personal one for Holly and her family, after her five-year-old son Sebastian was diagnosed with XLH last year...

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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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