General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
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Our Mission

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.

Batten families talk about Battens

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

Latest News

BDFA Christmas Cards Now On Sale!

BDFA Christmas cards now on sale!

The BDFA Christmas card packs are now available for purchase in our online shop! This years card design features some of our amazing Batten families. All proceeds go directly towards…

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News On The BDFA Charity Incorporation

News on the BDFA Charity Incorporation

The Trustees and team are pleased to advise that on 1 September 2024 the Batten Disease Family Association transitioned to a Charitable Incorporated Organisation (CIO) formed under the Charities Act…

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Latest News

Visit the online shop to help support the work of the BDFA

Buddy Front FINAL
Buddy Front FINAL
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Bandana FINAL2
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Large BDFA Awareness Ribbon
BDFA Collection Tin FINAL
BDFA Collection Bucket FINAL
Pin Badge 1 FINAL
Buddy Front FINAL IMG 9546 Bandana FINAL2 Cam Orange T Shirt Model 2 Large BDFA Awareness Ribbon BDFA Collection Tin FINAL BDFA Collection Bucket FINAL Pin Badge 1 FINAL

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease