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 …

by Claire Warburton

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 …

by Claire Warburton

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!

by Claire Warburton

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 …

by Claire Warburton

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 …

by Admin OG

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 …

by Admin OG

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. …

by Admin OG

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 …

by Admin OG

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 …

by Admin OG

This webinar was organised to draw attention to the urgent challenges facing adults with XLH by sharing views from patient organisations, clinicians and researchers. We hope to provide information on the unmet needs of adults with XLH, and to give evidence on current and future approaches to treatment and research in adult care. Our stakeholders …

by Admin OG