Bruck Syndrome Charity 

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 improve the quality of life for individuals and families affected by Bruck Syndrome. Once registered as a charity, we will work to achieve this through three key charitable aims:

Preserving Health 

We will provide support services and information to help individuals affected by Bruck Syndrome, and offer financial assistance for specialised equipment and therapies not normally available from statutory authorities.

Advancing Education

We will develop accurate, expert-reviewed resources to educate the public, medical professionals, and researchers about Bruck Syndrome, its diagnosis, and its management.

Promoting Research 

We will fund vital scientific and medical research into the causes, treatment, and management of Bruck Syndrome, ensuring that the useful results are shared publicly to benefit everyone.

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.