An Invitation to the Brittle Bone Society 2024 Mini Conference

August 2024

Dr Andrew Rankin

Brittle Bone Society 2024 Mini Conference, 10 August 2024

FOP Friends was invited to join the Brittle Bone Society (BBS) 2024 Mini Conference at the University of Warwick on 10th August.

While the focus was of course on Osteogenesis Imperfecta (Brittle Bone), including clinical trial updates, this community have many needs common with those of people living with FOP, so presentations on Schools and Inclusivity by Specialist OT Kieran Murphy (Sheffield) and Improving Dental Healthcare Pathways (Niall McGoldrick, Dundee) had relevance and had common themes with the experiences in our community.

As part of my role as a trustee, I represent FOP Friends on the NHS Adult Rare Bone Disease – Rare Disease Collaborative Network (RDCN) which was launched last year.  It was good to hear updates on their work from co-chair Thines Ganeshamoorthy, who was joined by fellow RDCN members Coreen Kelday, BBS Support Development Officer and Jonathan Gibson, Campaign Lead for Metabolic Support UK.

Thines explained the vision of the RDCN to enhance coordination, diagnosis and treatment, informing service commissioning throughout the NHS; as well as creating a wider awareness and more research incorporating a collaborative and patient-centred approach to care and research.  Some time was spent discussing the emerging Multi-Disciplinary Team meetings, creating virtual National and Regional Multi-Disciplinary Teams to bring the patient ‘virtually’ to experts for diagnosis/assessment and management, no matter where they were located in the UK.  The most advanced MDT is Southern region with others emerging, and geographic gaps being identified to create new teams.

Interactive digital media was used to capture the views, opinions and feedback of attendees and when polled on which RDCN objectives were the biggest priority: Raising Awareness, Regional Virtual MDTs and Training of HCPs topped the list; with success being measured by easier local access to care and the local hospitals being part of an MDT.

The meeting was an excellent mix of clinical and research updates, advice and experience in accessing needs, plus importantly lots of input and feedback from the OI community attending.  It is clear that FOP Friends benefit greatly and are stronger from having partners across the rare bone disease community and being intimately involved in multiple organisations with overall common objectives and it was and honour and pleasure to participate on your behalf.

If you would like to learn more about the RDCN, or would like to share their work with your healthcare professional, please visit: https://metabolicsupportuk.org/information-and-advice/imd-info-hub/adult-rare-bone-disease-network/

Andrew Rankin, FOP Friends Trustee, August 2024