Brittle Bone Society
Brittle Bone Society is a non-profit organization based in the United Kingdom that provides support and information to people affected by Osteogenesis Imperfecta (OI), also known as brittle bone disease. The society was established in 1968 and has since been a leading source of information and support for individuals and families affected by OI.
History
The Brittle Bone Society was founded in 1968 by Margaret Grant MBE, a mother of two children with OI. Margaret's vision was to create a support network for families dealing with the challenges of OI. The society has grown over the years and now provides a wide range of services to its members.
Mission and Services
The mission of the Brittle Bone Society is to promote the welfare of people living with Osteogenesis Imperfecta in the UK. The society provides a variety of services to its members, including:
- Information and advice on living with OI
- Financial assistance for the purchase of specialist equipment
- Support for research into OI
- Advocacy on behalf of people with OI
The society also organizes events and activities to bring together people affected by OI, providing opportunities for social interaction and mutual support.
Research and Advocacy
The Brittle Bone Society is committed to supporting research into Osteogenesis Imperfecta. The society provides funding for research projects and works closely with medical professionals and researchers in the field of OI.
In addition to supporting research, the society also advocates for the rights of people with OI. This includes lobbying for changes in legislation and policy that affect people with OI, and raising awareness of the challenges faced by people living with this condition.
Membership
Membership in the Brittle Bone Society is open to anyone who is affected by OI, their families, and anyone interested in supporting the work of the society. Members receive a range of benefits, including access to information and advice, financial assistance, and the opportunity to participate in society events and activities.
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Contributors: Prab R. Tumpati, MD