General: 07354 486586   |   Fundraising: 07745 210212   |   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

Theranexus Update For CLN3 Programme

Theranexus Update for CLN3 Programme

Dear Families, You may be aware that there was a press release last week from Theranexus about the Batten-1 clinical trial for CLN3 (Theranexus_PR_Cash_Position_Dec_31_2023_VDEF.pdf). Beyond Batten have followed this up…

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International Epilepsy Day

International Epilepsy Day

It’s International Epilepsy Day - a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. While everyone’s…

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Latest News

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