Batten Disease Family Association

Who we are

The Batten Disease Family Association (BDFA) exists to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need. 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 treatments and ultimately a cure.

Batten disease is a group of devastating genetic neurodegenerative diseases for which there is no cure. 

We work with all members of a family and the professionals who work with them for as long as the family want.