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NICE Decision

NICE Decision - 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is a dreadful blow to all those with children on treatment,…

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We Are Pleased To Announce That We Are Now A Proud Member Of The Disabled Children’s Partnership

We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their families in England. We know that…

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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