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...
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
Prof Stuart Ralston and his team have asked if XLH UK members would be interested in joining his disease awareness session on XLH this TUESDAY. Stuart will be joined by patient Ryan Frew on his experiences...
Webinar
NICE is currently deciding on who can get access to new treatments like burosumab in England and Wales. To do this, NICE needs more evidence for how XLH affects patients’ lives today. Because it is a...
Call to Action, Research
Trustee Sally Hatton on this brilliantly written article on how her challenges with XLH an often with other #rarediseases are sometimes not immediately obvious. The #IAmNumber17 campaign has been critical in...
Publication
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...
Conference, News
Authors: Raja Padidela 1 , Moira S Cheung 2 , Vrinda Saraff 3 , and Poonam Dharmaraj 4 1 Royal Manchester Children’s Hospital and Faculty of Biology, Medicine and Health, University of Manchester,...
Publication, Research, Treatment