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NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England.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. ...
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:...
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...
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...
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...
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:...
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...
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...
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 came to Engineers’ House, Clifton, Bristol, to share their...
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:...
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:...
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 recommend burosumab for the eligible adult population. This...
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...
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...
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 where helpful information was shared, new friendships were...
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 March 2021. We have also liaised closely with select expert...
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 as co-chair of XLH Alliance and trustees Sarah Mitson and...
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 results from the IXLHA International Patient Survey. There...
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 Pathway- Topic Selection Survey- Writing Group- Next StepsPatient Case...
XLH UK adult care webinar #1
Please join Associate Prof Kassim Javaid and Oliver Gardiner on Wednesday 16th February 2022 at 8pm-9pm to give a key updates on adult access to burosumab. We will be covering:Medicine review process and where we are nowNew Clinical GuidelinesQuality of Life...