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,...
Mar 5, 2024
We kicked off 2024 chatting with 17-year-old Kieron Innes, a talented gymnast living with XLH. Kieron was diagnosed with XLH when he was already years into his impressive gymnastics journey. In the interview, we hear about some of the tough mental and physical...
Feb 25, 2024
In 2023, XLH UK collaborated with Joe Bonnell, a photographic ethnographer, and filmmaker Rachel Lewis to capture the stories of some of the XLH community. I sat down with Sarah Mitson, Chair of XLH UK, to explore the motivation behind commissioning these powerful...
