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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

Sir Ian Botham’s Big Birthday Fundraiser

Sir Ian Botham’s Big Birthday Fundraiser

Join Sir Ian Botham and special guests for his big birthday fundraiser at the Wormsley Estate, where cricket, fine food and incredible live music combine for the perfect family day…

BDFA 10th Annual Walk

BDFA 10th Annual Walk

We are now back in the office after a group of 80 of us spent the weekend at Bourton-on-the-Water in the Cotswolds for the Batten Disease Family Association 10th anniversary…


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