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...
Mar 11, 2025
On February 28th 2025, we marked Rare Disease Day, a time to raise awareness and support for the 300 million people worldwide living with rare conditions. This year’s theme, Stronger Together, highlighted the power of community in driving change. To celebrate, the...
Jan 25, 2025
On Saturday 11th January, some of the trustees of XLH UK came together in London to reflect on everything that had happened in 2024 and a great year for our community! We celebrated the progress made in raising awareness and supporting the XLH community,...
