General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Family Networking Weekend

Its our Family Networking Weekend and you can keep up to date on our Facebook page and Twitter. After the weekend, we will have our video from the event as well as lots of pictures for you to see.

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Disability Living Allowance UPDATE

With the help of Greg Mulholland, MP, the BDFA have met with Justin Tomlinson, Minister for Disabled People at the Department of Work and Pensions. This meeting enabled us to talk with him and his team about the process of…

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Science Is Again Threatened With Cuts: Help Us Tell The Government That Science Is Vital

Threats to science funding is a threat to us all, please visit and send an e-postcard to the Chancellor about why science and research is vital for Batten disease. The government is once again threatening research with cuts of 25%…

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Newsletters – Autumn/Winter 2015

Our Newsletter and Batten Bulletin are both now available for download. BDFA Newsletter Batten Bulletin

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ITV This Morning – The Harrison Family

The lovely Harrison family whose son James has CLN1 (Infantile Batten disease) will be raising awareness on This Morning on Monday 5th October. Please watch and let people know, a great platform to raise awareness.  

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Appeal To Build First Rare Diseases Centre For Children

Birmingham Children's Hospital is launching a £3.65 million appeal to raise money to build the UK's first rare diseases centre for children.   Read more here

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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