Nov 29, 2023
NICE has released draft guidance on the Health Technology Assessment of burosumab for adults in England. Their evaluation and XLH UK’s response is explained in the press release below, along with a five step Call to Action! for all members of the XLH community. ...
Nov 9, 2023
Welcome to XLH’s Navigator newsletter for Autumn 2023. Hear about our recent Connect meeting and a visit to the Welsh Parliament. Don’t miss the next newsletter and subscribe here: https://xlhuk.org/registration-form/ You can view it here:...
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:...
