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Ollie Meets His Hero, Ed Sheeran

Words from Ollie's Army Battling Against Battens We have the most incredible news to share with you all! Last night our little boy met his hero. Through the power of social media Ollie's story reached Ed Sherran. Ed and his team were…

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BDFA Spring Newsletter & Bulletin

Our latest editions of our Spring Newsletter and Bulletin are available to read or download. Download below Spring Newsletter Spring Bulletin BATcure Newsletter  

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Family Conference 2017 Information

These are the Conference documents that have been sent to those attending. If you require them again please see below. Conference Outline Kids Conference Outline Confirmation Letter   There is now LIMITED Booking available for BDFA Family Conference 2017 -…

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Laboratory Open Day At Manchester Metropolitan University

Laboratory Open Day at Manchester Metropolitan University hosted by Professor Tristan McKay and the BDFA: Thursday 30th March 2017   The BDFA would like to thank Professor Tristan McKay and his group at Manchester Metropolitan University (MMU) for hosting a very…

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Undiagnosed Children’s Day 2017

On Friday 28 April 2017 we will mark Undiagnosed Children's Day. Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose.…

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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