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Our Mission

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.

Our Plans

a. Employ a full-time support and advocacy worker
b. Operate a Freephone helpline
c. Commission the first Batten disease Clinical Nurse Specialist in the UK
d. Operate a small grant scheme to help meet the needs of caring for a child or young person living with Batten disease.
e. Increase our research funding in the UK and worldwide into potential therapies and ultimately a cure.

Latest News

Cerebra Innovation Centre

Cerebra Innovation Centre

Cerebra Innovation Centre may be able to help find equipment to suit your child or young persons needs. Cerebra Innovation Centre was originally set up because although some equipment is…

Pledge for Patients

Pledge for Patients

Ahead of the forthcoming election Rare Disease UK, Genetic Alliance UK and SWAN UK have joined forces to launch their first ever joint campaign. They have created a pledge card…

Challenge Yourself for BDFA

Challenge Yourself for BDFA

We have places in a whole series of events over the next 9 months ranging from road runs, muddy runs, cycling and long walks! A lot of the events listed…


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