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 experiences and friendship. From Dr Roy’s informative morning session to …
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 newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here: https://us21.campaign-archive.com/?u=ab44815e677ed144fd0a6c88a&id=8a682e18fc
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 newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here: https://us21.campaign-archive.com/?u=ab44815e677ed144fd0a6c88a&id=01077bd339
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 life-changing treatment is the first to tackle the underlying problem, …
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 newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here: https://mailchi.mp/4ad72bbb5b1b/welcome-to-your-2nd-xlh-uk-newsletter-6582
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 challenges that XLH presents. Don’t miss the next newsletter and …
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 formed and the children’s facepainting was a …
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 clinicians, so that NICE has reliable information with which to make …
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 to our ‘Events’ page https://xlhuk.org/events/ We really hope you can make it!
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 Sally Hatton represented XLH UK in the room. International XLH Alliance …
