Bruck Syndrome Charity
aims to improve the quality of life of people with Bruck Syndrome.
aims to improve the quality of life of people with Bruck Syndrome.
Bruck Syndrome is a rare genetic disorder characterised by a combination of brittle bones (osteogenesis imperfecta) and joint contractures. It typically manifests in infancy or early childhood, affecting bone strength and joint mobility.
Our aim is to relieve the need and protect the health of individuals, their families, and carers affected by Bruck Syndrome across the UK for the public benefit. As a registered charity, we work to achieve this through our key charitable aims:
Providing Active Communication
We offer friendship and reassurance to those diagnosed with Bruck Syndrome to reduce their social isolation.
Raising Awareness
We raise awareness of Bruck Syndrome and its implications for the individual, their family, and the public
Promoting Knowledge
We promote understanding and acknowledgement of Bruck Syndrome within the medical profession and support services.
Encouraging Research
We encourage research into potential treatments for Bruck Syndrome and ensure the dissemination of useful results to the public
We have a clear vision for supporting the Bruck Syndrome community. Our goal is to build a future where:
No one feels alone
Through our planned moderated online support group and listening and signposting service, we will create a community that offers understanding and peer-to-peer support.
Everyone has access to help
Our grant-making programme will aim to relieve financial pressure, helping families access the vital therapies and equipment they need.
Knowledge leads to better care
By funding research and educating healthcare professionals, we will contribute to improved diagnosis, better treatments, and a higher standard of care for all those affected by Bruck Syndrome.