Nov 29, 2023
NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England. Their evaluation and XLH UK’s response is explained in the press release below, along with a five step Call to Action! for all members of the XLH community. ...
Jul 17, 2023
“An afternoon of enlightening talks and updates!” The Brittle Bone Society (BBS) recently organised an event held at the Houses of Parliament in London to bring the OI CAN campaign to the attention of policymakers. Developments supporting those with...
Jul 7, 2023
Thank you to Anne Williams who attended our recent family day in Bristol and brought this cute soft toy family with her. Anne has kindly donated them, and we need some help to name them because the little one is going to become our XLH UK mascot, welcoming newly...
Jun 2, 2023
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...
Sep 15, 2022
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...
Jul 27, 2022
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...
