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Rare Bone Alliance Meeting

  • Posted on Feb 4, 2020

At the Brittle Bone Society’s 2019 annual conference, an event hosted by Chief Executive of the BBS, Patricia Osborne, and Trustee Angie Stewart, attendees welcomed the decision for representatives from rare bone charities to meet and discuss ways to improve the overall experiences of those with rare diseases.

On 18 January 2020, Patricia Osborne was delighted to host a meeting with Trustee Angie Stewart at the offices of Vice Chairman, John Phillips, at Jones Day, along with representatives from Softbones UK, Fibrous Dysplasia Support Society, XLH UK, the Restricted Growth Association, and Bristol Children’s Hospital. At this inaugural meeting the group welcomed specialist nurse Ian Tucker of Bristol University Trust Hospital to hear his updates on a new rare bone nurses network. This forum is a great way for all to share knowledge and collaborate.