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
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...
NewsWelcome 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
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...
NewsWelcome 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...
NewsWelcome 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
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
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
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
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
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
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
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...
News, Webinar
Today is International XLH Awareness Day!!! Earlier this year we surveyed 350 adults with XLH to look at the current care standards that we receive. Comparing the current care standards to the clinical...
Publication, Treatment
We are very excited to support Paralympian XLH’er Jennyfer Parinos at this year’s games in Tokyo. Coverage for Table Tennis starts on Wednesday the 25th of August on Channel 4. Wishing...
News
Hi all, there have been lots of developments in the last 4 months that I am keen to share with you. Firstly, earlier in the year we joined NICE’s Scientific Advice committee to offer insights and advice on...
News, Research