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...
Jun 2, 2023
The 52 people who attended our Family Day on 21st May were kind enough to bring the sunshine with them, thank you! From as far afield as Manchester, London and even Belfast, XLHers and their families came to Engineers’ House, Clifton, Bristol, to share their...
May 5, 2023
Welcome to XLH’s Navigator newsletter for Spring 2023. Hear about our upcoming Family Day and how a team in Northern Ireland have been inspiring us with their fitness and fundraising! Don’t miss the next newsletter and subscribe here:...
Feb 16, 2023
Welcome to XLH’s 3rd edition Navigator newsletter. Hear about how new medicines get approved for funding and the priorities XLH UK has set to help all those with XLH find their best care. Don’t miss the next newsletter and subscribe here:...
Feb 15, 2023
Scotland agrees access to burosumab for adults XLH UK founder Oliver Gardiner: “This is fantastic news for adults with XLH in Scotland and is a leap forward, setting a precedent as the first of the UK nations to recommend burosumab for the eligible adult population....
