Oct 7, 2023
At a recent Senedd roundtable event, Oliver Gardiner, representing XLH UK, and Claire Lewis, a Welsh XLH patient, were joined by Mike Hedges MS. Mike Hedges, who chairs the Senedd Cross Party Group on Rare Diseases, brought invaluable expertise and leadership to the...
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...
Jul 17, 2023
“An afternoon of enlightening talks and updates!” The Brittle Bone Society (BBS) recently organised an event held at the Houses of Parliament in London to bring the OI CAN campaign to the attention of policymakers. Developments supporting those with...
Jul 16, 2023
Welcome to XLH’s Navigator newsletter for Summer 2023. Hear about our the Family Day and Oliver’s visit to the Houses of Parliament. Don’t miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here:...
Jul 11, 2023
Newsflash! We are delighted to announce that the partnership between Kyowa Kirin and XLH UK has been recognised in the PPI 2023 Awards. This is for a partnership that led to a framework of a networked service model on care of adults with rare bone conditions. For more...
Jul 7, 2023
Thank you to Anne Williams who attended our recent family day in Bristol and brought this cute soft toy family with her. Anne has kindly donated them, and we need some help to name them because the little one is going to become our XLH UK mascot, welcoming newly...
