Mar 20, 2026
Friday 20th March is World Oral Health Day It’s a good opportunity to talk about XLH and teeth. Did you know that teeth develop differently if you have XLH? For one thing, the enamel – the outer layer of your tooth – is thinner and prone to microscopic cracks....
Dec 15, 2025
We’re delighted to share an incredible fundraising achievement from Holly Knight, who has now completed three half marathons for XLH UK this year! Earlier in the year, we celebrated her completion of the Gloucester Half Marathon, and she’s since gone on to...
Dec 4, 2025
Award recognition for XLH UK patient stories! We are excited to share that our patient stories about the impact of XLH on quality of life have been recognised as best in class. Our researchers Joe Bonnell and Rachel Lewis were celebrated for the XLH UK research at the...
Nov 9, 2025
We’re sending a huge congratulations to Mhairi Duncan for completing the Lisbon Marathon on 25th October 2025, raising funds and awareness for XLH UK in the process. Mhairi took on this challenge not only as a personal milestone but to support the community. And...
Oct 25, 2025
To make treatment easier and safer, burosumab will soon be available in a Pre-Filled Syringe (PFS) across the UK, for adult and children patients. The move to pre-filled syringes needs to happen in a careful and responsible way, because the existing stock of...
Aug 13, 2025
We are pleased to share with you a new patient story in which we hear from Amy, who opens up about the personal choices she made when starting her family. Amy has XLH and, after careful consideration, chose IVF to ensure that her two daughters would not carry the XLH...
