General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
Dr Joanna Nightingale, Head Of Scientific Affairs Attended A Roundtable Meeting Hosted By MAP Patient Access Limited

On the evening on Wednesday 26th April, Dr Joanna Nightingale, Head of Scientific Affairs attended a roundtable meeting hosted by MAP Patient Access Limited on “Harnessing the potential of advanced therapy medicinal products (ATMPs) – the case for change” at…

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Join Our Friendly Dads Chat Session On Tuesday 2nd May At 8pm On Zoom

Join our friendly Dads chat session on Tuesday 2nd May at 8pm on zoom. The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer…

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BDFA Staff News-Head Of Family Support, Sian Fisher Leaving In June

Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…

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Donate to the BDFA

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

Thank you for making a donation to the work of the BDFA.

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