XLH UK Community event is announced

XLH UK Community event is announced

Registration is open! Sunday 2nd June We are pleased to announce that the next XLH UK Community Day will take place on Sunday 2nd June 2024. Our annual event will be bigger and better than ever – for free registration please follow the link here. It will be held...
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...
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...
Scotland confirms burosumab for children

Scotland confirms burosumab for children

Scotland confirms burosumab for children XLH UK is pleased to to report that the Scottish Medicines Consortium (SMC) has confirmed access to burosumab (marketed as Crysvita) for the treatment of X-linked hypophosphataemia (XLH) in children and adolescents aged 1 to 17...
XLH UK campaign on BBC News

XLH UK campaign on BBC News

As part of our Call to Action, members of the XLH community have been talking to the press about the draft guidance from NICE to reject burosumab for adult patients. We are thrilled to see that our message has been highlighted by both BBC Wales and BBC NorthWest! You...
NICE guidance rejects burosumab for adults

NICE guidance rejects burosumab for adults

NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England. Their evaluation and XLH UK’s response is explained in the press release below, along with a five step Call to Action! for all members of the XLH community. ...