Helping those with Osteogenesis Imperfecta (OI)
Brittle Bone Society
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About the Brittle Bone Society
Who we are
The Brittle Bone Society is the sole UK charity supporting people with Osteogenesis Imperfecta (OI).
What is OI?
Osteogenesis Imperfecta (OI) is a genetic bone condition characterised by fragile bones that break easily. OI is caused by a genetic mutation that affects the body's production of collagen, which can be found throughout the body. As well as frequent fractures bones, people with OI often have muscle weakness, hearing loss, fatigue, curved bones, scoliosis, blue sclera, brittle teeth and short staturs. OI has a wide range of severities and can affect people in many different ways.
The Brittle Bone Society wants a world in which the needs of people in the UK and the Republic of Ireland living with Osteogenesis Imperfecta are understood, respected and fully met. We will work towards improving the quality of life for people diagnosed with OI in the UK and the Republic of Ireland, providing advice, signposting and information, providing financial support for wheelchairs and equipment and raising awareness of the condition. We will also support and work with specialist healthcare professionals.
- Develop and improve our services
- Maximise our relations with specialist healthcare professionals
- Grow our volunteer support
- Expand awareness of OI and its impact on individuals and families
- Increase the money we raise to fund our services
- Improve our efficiency and effectiveness
What we do and the support we offer
We work closely with the UK highly skilled centres for OI: Sheffield Children's Hospital, Great Ormond Street Hospital London, Birmingham Children's Hospital, Bristol Royal Hospital for Sick Children and Yorkhill Children's Hospital Glasgow. Additionally we liaise with healthcare professionals across the country that make up our Medical Advisory Board in order to provide members with the latest updates on care. We fundraise for specialsed wheelchairs and offer a free confidential support service as well as signposting on day to day issues such as benefits and treatments. Isolation affects many of our members and we arrange regular conferences to encourage networking specifically through our area support groups, annual family conference, VOICE youth events and other tailored events.