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 …
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 were representatives from XLH UK and several UK medical specialists in attendance. Hosted by …
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 StudiesSurveys Questions and Answers This webinar will be hosted on Microsoft Teams. (No …
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 surveyPatient Case Studies Questions and Answers This webinar will be hosted on Microsoft Teams. …
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 you @jennymarxx the best of luck. We are super excited to support a 2nd Paralympian XLH’er Björn Schnake at this year’s games in Tokyo. From Hildesheim …
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 experiences and challenges that adults with XLH are faced with. I am proud that the feedback we …
