Brittle Bone Society

About Brittle Bone Society

The Brittle Bone Society is the only organisation in the UK and the Republic of Ireland dedicated to addressing the needs of individuals born with Osteogenesis Imperfecta (OI). Founded in Dundee in 1968 by Margaret Grant MBE, who herself was born with OI, it became the world’s first registered charity focused on supporting those with this rare condition.

Warren Vale, Account Executive, HSF Health Plan, presented a grant of £2,000 to Patricia Osborne, CEO, Brittle Bone Society.

Transforming Rare Bone Care

The Brittle Bone Society has been proactive in this space for years. In 2015, they initiated an informal collaboration known as the Rare Bone Alliance. It now includes six patient groups that share the same NHS healthcare professionals and jointly advocate for enhanced, coordinated care for adults with rare bone conditions. While specialised multidisciplinary NHS centres exist for children with bone disorders, there have been no formal networks to support adults—making the establishment of the RDCN a significant milestone for their community.

55 Years of OI Support

Approximately 5,000 individuals in the UK are estimated to be living with OI, with 2,777 registered in the Brittle Bone Society’s database. For over 55 years, the charity has steadfastly supported this community, significantly improving access to healthcare and essential resources while advocating for better outcomes for those affected.

The Brittle Bone Society is committed to driving transformational change for individuals living with Osteogenesis Imperfecta (OI) and other rare bone conditions. A key focus of its current efforts is providing vital administrative support to the newly established NHS Adult Rare Bone Collaborative Network (RDCN). Comprising 17 NHS Trusts, this network was endorsed by NHS England in November 2023 to enhance care for adults with rare bone diseases. However, the initiative currently needs dedicated funding.

The Grant