Aug 23, 2023
Sally is a positive person, but has had to find ways to accommodate a series of major leg operations. Sally shares with us what it is like to be a younger person with XLH and how she navigates everyday life on crutches. Her active social life is part of her approach...
Aug 23, 2023
Claire is part of a multi-generational family with XLH. We hear how difficult finding consistent best care has been for her and her sister, and how treatment and care is improving for younger generations. Claire reflects on the challenges of managing work and family...
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 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...
