IMPORTANT MESSAGE: We are still having issues with our telephone systems – our general number 01252 416323 is not working. To contact the BDFA you can call the following numbers:

General: 01252 416110 | Fundraising: 07876 682589 | Support: 07876 712553 | Helpline: 0800 046 9832

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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

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