Batten Disease Family Association

The BDFA’s mission is to: Bring light to Batten disease by being the central point of excellence in the UK for raising awareness, supporting affected families, and facilitating research into the disease.

The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten disease.  At present there is no cure for this group of genetic metabolic diseases, which causes a progressive deterioration of the brain and nervous system, leading to an early death.

Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a cure.