To find out more about our work please read our real life stories and see what our members have to say.
The Brittle Bone Society was established in 1968. We support the needs of people born with the rare condition Osteogenesis Imperfecta (OI), and their families in the UK and Republic of Ireland.
We work towards improving the quality of life for people diagnosed with OI by providing emotional support, signposting and information, financial help for wheelchairs and equipment, and raising awareness of the condition. We offer access to a range of educational and networking events. We also support and work with specialist healthcare professionals. We get involved in campaigns and offer an advocacy role when required at a policy level.
Our charity mission seeks a world in which the needs of people living with OI are better understood, respected and fully met.
We continue to develop our Patient and Public Involvement groups over time and encourage our members and supporters to influence our strategic direction.
We appointed our own Medical Advisory Board in 2012 and our Scientific Advisory Board in 2016, which are both comprised of leading healthcare specialists in the field of OI. Our research grants programme was established in May 2017.
We champion useful partnerships and have forged meaningful relations with other rare bone groups including X-linked Hypophosphatemia (XLH), Fibrous Dysplasia, and Hypophosphatasia (HPP) during our involvement with programmes like the RUDY study.
Our national charity achieves a great deal by bringing together clinical experts, our professional staff, and volunteers – all of whom share a passion for the cause and have the skills to deliver our work.
We also work closely with other organisations in the rare disease field and our sister organisations, the Osteogenesis Imperfecta Federation Europe (OIFE) and the Osteogenesis Imperfecta Foundation (OIF) in the USA.
Working in this way means that we can ensure that our support and information really makes a difference, our research and campaigning can change lives and our awareness work reaches as many people as possible.