August 29, 2023
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. A big...
Call to Action, NewsOur Latest News
July 17, 2023
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...
Call to Action, News
July 11, 2023
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...
News, PublicationJuly 7, 2023
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...
Call to Action, News
June 2, 2023
XLH UK Family Day, Sunday 21st May 2023 “…Another great meet-up! Roll on the next!”
The 52 people who attended our Family Day on 21st May were kind enough to bring the sunshine with them, thank you! From as far afield as Manchester, London and even Belfast, XLHers and their families...
Call to Action, Conference, News
May 5, 2023
XLH UK Newsletter – Navigator Spring 2023 Edition
Welcome to XLH’s 3rd ediition 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...
NewsFebruary 16, 2023
XLH UK Newsletter – Navigator 3rd Edition
Welcome to XLH’s 3rd ediition 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...
News
February 13, 2023
Press Release – Adults with XLH will now be able to access new treatment options on the NHS in Scotland
Commenting on SMC’s decision, XLH UK founder Oliver Gardiner explained that “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...
NewsJanuary 17, 2023
XLH UK Newsletter – Navigator 2nd Edition
Welcome to XLH’s 2nd ediition 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...
NewsNovember 14, 2022
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...
News
October 4, 2022
XLH UK Family Day, Sunday 2nd October 2022 “A Great Day”
We were delighted to welcome so many of you to the Family Day on Sunday 2nd October in Manchester, especially to people who braved all the rail disruption to get there! We hope you found it was a lovely day...
Call to Action, Conference, News
September 15, 2022
Latest news from NICE’s Topic Selection of using burosumab in XLH adults (September 2022)
Latest news regarding NICE’s Topic Selection of using burosumab in XLH adults (September 2022) Background You may already be aware that XLH UK have been working hard to represent patient views to NICE since...
Call to Action, News, Treatment
September 2, 2022
XLH UK Family Day, Sunday 2nd October 2022. Don’t delay! Register your place today!
Only 4 weeks to go until we look forward to welcoming you to our Family Day event 11am – 4pm at The Macdonald Hotel, Manchester, M1 2PG For more event information (FAQs) and to secure your place(s), please go...
Call to Action, News
July 27, 2022
International XLH Alliance Patient Group Meeting
The day before the 3rd International XLH Symposium took place in Dublin, we had a meeting of XLH patient groups from around the world, hosted by International XLH Alliance. Oliver Gardiner led several sessions...
Call to Action, News, Research
July 24, 2022
3rd International XLH Symposium
The 3rd International XLH Symposium took place on the 1st July at University College, Dublin. The final session of the day was ‘Global Health Disparities and Access to Care’, where Oliver Gardiner presented...
Conference, News, Research
February 25, 2022
XLH UK adult care webinar #2
Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 2nd March 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Update on NICEUpdate on...
News, Webinar