Our phone lines aren’t available at the moment, but you can reach us on the free phone number 0800 046 9832 or you can call us on 07876 712553 or 07711 204474.

We apologise for any inconvenience created and we hope we will be up and running very soon.

We will only be using the PO Box address we have until early 2016. If you are sending anything to the BDFA, please use the Farnborough address which you can find here

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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.

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