News
XLH UK Community event is announced

XLH UK Community event is announced

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 at the National Conference Centre,...

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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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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 years with radiographic evidence of bone...

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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As part of our Call to Action, members of the XLH community have been talking to the press about the draft guidance from NICE to reject burosumab for adult patients.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...

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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NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England.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. ...

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XLH UK Newsletter – October 2023

XLH UK Newsletter – October 2023

Welcome to XLH’s Navigator newsletter for Autumn 2023. Hear about our recent Connect meeting and a visit to the Welsh Parliament. Don’t miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here:...

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XLH UK visit the Welsh Parliament

XLH UK visit the Welsh Parliament

At a recent Senedd roundtable event, Oliver Gardiner, representing XLH UK, and Claire Lewis, a Welsh XLH patient, were joined by Mike Hedges MS. Mike Hedges, who chairs the Senedd Cross Party Group on Rare Diseases, brought invaluable expertise and leadership to the...

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XLH UK Competition Winner

XLH UK Competition Winner

Thank you to everyone who suggested some brilliant names for our new XLH UK mascot!  It was very hard to pick just one, but we’re pleased to say that the winning name is HUXLEY.  Jane, her granddaughters and the cute soft toy family made by...

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Oliver represents XLH UK at The Houses of Parliament

Oliver represents XLH UK at The Houses of Parliament

"An afternoon of enlightening talks and updates!" The Brittle Bone Society (BBS) recently organised an event held at the Houses of Parliament in London to bring the OI CAN campaign to the attention of policymakers. Developments supporting those with Osteogenesis...

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XLH UK Newsletter – July 2023

XLH UK Newsletter – July 2023

Welcome to XLH's Navigator newsletter for Summer 2023. Hear about our the Family Day and Oliver's visit to the Houses of Parliament. Don't miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here:...

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XLH UK recognised in PPI 2023 Awards

XLH UK recognised in PPI 2023 Awards

Newsflash! We are delighted to announce that the partnership between Kyowa Kirin and XLH UK has been recognised in the PPI 2023 Awards. This is for a partnership that led to a framework of a networked service model on care of adults with rare bone conditions. For more...

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XLH UK Competition Time!

XLH UK Competition Time!

Thank you to Anne Williams who attended our recent family day in Bristol and brought this cute soft toy family with her. Anne has kindly donated them, and we need some help to name them because the little one is going to become our XLH UK mascot, welcoming newly...

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XLH UK Newsletter – Navigator Spring 2023 Edition

XLH UK Newsletter – Navigator Spring 2023 Edition

  Welcome to XLH's Navigator newsletter for Spring 2023. Hear about our upcoming Family Day and how a team in Northern Ireland have been inspiring us with their fitness and fundraising! Don't miss the next newsletter and subscribe here:...

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XLH UK Newsletter – Navigator 3rd Edition

XLH UK Newsletter – Navigator 3rd Edition

Welcome to XLH's 3rd edition Navigator newsletter. Hear about how new medicines get approved for funding and the priorities XLH UK has set to help all those with XLH find their best care. Don't miss the next newsletter and subscribe here:...

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Scotland grants XLH adults access to burosumab

Scotland grants XLH adults access to burosumab

XLH UK founder Oliver Gardiner: “This is fantastic news for adults with XLH in Scotland and is a leap forward, setting a precedent as the first of the UK nations to recommend burosumab for the eligible adult population. This life-changing treatment is the first to...

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XLH UK Newsletter – Navigator 2nd Edition

XLH UK Newsletter – Navigator 2nd Edition

Welcome to XLH's 2nd edition Navigator newsletter. We hope that our updates in this edition will help you to navigate your way through some of the challenges that XLH presents. Don't miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You...

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Launching XLH UK’s Newsletter – Navigator

Launching XLH UK’s Newsletter – Navigator

Welcome to XLH's first newsletter called 'Navigator'. XLH UK was set up to help those with XLH and related disorders within the UK through research, support and advocacy. We hope that a regular newsletter will help you to navigate your way through some of the...

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