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The BDFA’s mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.

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Batten Disease

International Batten Disease Awareness Day- 9th June

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Introducing the BDFA

Upcoming News

Introducing The first BDFA Scientific Affairs & Research Newsletter!

13 August, 2026
The first edition of the BDFA Scientific Affairs & Research
Find out more

BDFA is supporting The Neurological Alliance calling on the government to introduce a Modern Service Framework for neurological conditions

7 August, 2026
Families with a Batten disease diagnosis are often overwhelmed trying
Find out more

Get tickets now for our first in person event for bereaved community

23 July, 2026
The BDFA are so pleased to be able to offer
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BDFA Newsletter

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We are the only registered charity providing professional support to individuals and families affected by Batten Disease in the UK.

BDFA is a working name of the Batten Disease Family Association CIO.

Registered Office: BDFA, PO Box 379, Shipley, BD18 9GE

The BDFA is a charity registered in England and Wales 1205650

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