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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

Horizon 2020 Societal Challenge

Horizon 2020 Societal Challenge

Good news for the next step in European Research funding for Batten disease. The proposal submitted by Dr Sara Mole, UCL London, has successfully passed the first round in the…

Our New Office

Our New Office

Please note we now have a new BDFA Office. Our address is The Old Library 4 Boundary Road Farnborough Hants GU14 6SF Our phone numbers and email addresses remain the…

SENDirect

SENDirect

The SENDirect website launched this week. Just type in your postcode and it will give you a list of services available in your area. You can search for free services…

British 10K London Race 2015

British 10K London Race 2015

NEW YEAR NEW START! Feeling a little jaded after the excess of Christmas? Looking for some inspiration to make a difference to Batten Disease? Wanting to set yourself a New Year challenge?…