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...
Jul 25, 2025
On Saturday 21st June, Northern Ireland had its own XLH Family Day and it was a brilliant success! The event brought together families affected by XLH for a day of connection, support, and community. We’ve been told the feedback from parents was really positive,...
Apr 10, 2025
STOP PRESS! Speakers announced We are delighted to confirm the speakers at the next XLH UK Community Day on Sunday 1st June 2025. There is still time to register for the event here. Keynote Speaker – Professor Kassim Javaid on the new Oxford University research...
Apr 7, 2025
We’re sending huge congratulations to Holly Knight, who completed the Gloucester Half Marathon on 30th March 2025 in support of XLH UK! This cause is a personal one for Holly and her family, after her five-year-old son Sebastian was diagnosed with XLH last year...
