The Brittle Bone Society (BBS) was delighted to participate in this important event at the House of Lords, supported by Baroness Margaret Curran and chaired by Lord Shinkwin alongside Luke Murphy MP.
Our delegation brought together a strong group of representatives from across the OI community. In attendance were Vice Chair John Phillips, CEO Patricia Osborne, and leading adult OI clinicians and Chairs of both our Medical Advisory Board (MAB) and Scientific Advisory Board (SAB), Professor Kassim Javaid (Oxford) and Professor Richard Keen (RNOH, London). Representing paediatric services were Dr Paul Arundel, Head of the Highly Specialised Service at Sheffield Children’s Hospital, and Dr Catherine DeVile, Head of OI service at Great Ormond Street Hospital. Also in attendance was industry representative Wills Hughes Wilson.
Also part of our delegation were BBS champions Steve Edney BEM and his son Max, along with Monique Jarrett – both of whom delivered powerful, personal testimonies that emphasised the real‑world impact of gaps in OI services. Unfortunately, one of our representatives, Fiona Holmes, was unable to attend due to unexpected travel issues.
Throughout the session, we engaged in a robust and constructive discussion on the persistent inequalities in care experienced by people living with Osteogenesis Imperfecta (OI). We highlighted the urgent need for improvements within the framework of the UK Rare Disease Plan and called for meaningful, high‑level engagement at Ministerial level to explore tangible solutions.
We encourage everyone to watch this space for next steps.
