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

NICE does not currently recommend burosumab for eligible adults – act now!

XLH UK Community event is announced

XLH UK Community event is announced

Our annual event will be bigger and better than ever, for free registration please follow the link here. We are thrilled to share that we have been successful in getting a National Lottery award from The National Lottery Community fund. This will allow us to expand...

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XLH UK Interviews gymnast Kieron Innes

XLH UK Interviews gymnast Kieron Innes

  We kicked off 2024 chatting with 17-year-old Kieron Innes, a talented gymnast living with XLH. Kieron was diagnosed with XLH when he was already years into his impressive gymnastics journey. In the interview, we hear about some of the tough mental and physical...

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Making the XLH Patient Stories

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...

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