Aug 11, 2024
Exciting News: XLH and other Rare Hypophosphatemias included in Genomics England's Generation Study We are thrilled to announce the launch of the Generation Study, which will test newborns for changes in genes linked to over 200 rare genetic conditions. The research...
Mar 11, 2024
Meet up on Sunday 2nd June We are pleased to announce that the next XLH UK Community Day will take place on Sunday 2nd June 2024. Our annual event will be bigger and better than ever. For how the day went, follow the link here. It will be held at the National...
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...
Aug 29, 2023
Thank you to everyone who suggested some brilliant names for our new XLH UK mascot! It was very hard to pick just one, but we’re pleased to say that the winning name is HUXLEY. Jane, her granddaughters and the cute soft toy family made by...
Jan 18, 2019
Final Recommendation We are absolutely thrilled to announce this morning that burosumab has been APPROVED for routine use on our NHS for children from 1 years up to young adults aged 16/17 years. This news completely changes the landscape for the estimated 250...
