General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
2019-01-30 16.03.06

The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.

The BDFA offers informed guidance and supports families and 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 range of cures. 

The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.

Lord Ian Botham speaking about Batten disease, the work of the Batten Disease Family Association and raising awareness

Latest News



The Batten Disease Family Association will be holding their Annual General meeting on Saturday 25th June 2022. This meeting will be held virtually via Zoom meetings. Registration details and link…

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Latest News

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All donations help us to provide the best support we can to families affected by Batten Disease.

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Thank you for your support.