“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 Osteogenesis Imperfecta (OI), XLH and other brittle bone conditions were shared with senior healthcare professionals, charity leaders and supporters. This included the establishment of a new NHS Rare Disease Care Network (RDCN) of over 22 hospitals across the UK.

Oliver was there as a trustee for XLH UK because, by actively participating in the RDCN, individuals with XLH will gain access to improved understanding, care, and support. Our ongoing collaboration with the BBS demonstrates our unwavering commitment to fostering positive change for those in the XLH community. The sun shone on the event and we extend our sincere appreciation to all the individuals who contributed to the success of the event.