General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
283101796 383774547120912 8252584926942972024 N
283101796_383774547120912_8252584926942972024_n
NW LW
Mat And Justin 2
0Q7A6060
GOSH 1
4. Nina And Lena
Jeffery And Family
Image(1)
286002626_5179122372136010_4301535159457313304_n
283101796 383774547120912 8252584926942972024 N NW LW Mat And Justin 2 0Q7A6060 GOSH 1 4. Nina And Lena Jeffery And Family Image(1) 286002626 5179122372136010 4301535159457313304 N

Our Mission

The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.

The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures. 

The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.

Batten families talk about Battens

Lord Ian Botham speaking about Batten disease, the work of the Batten Disease Family Association and raising awareness.

Latest News

News On The BDFA Charity Incorporation

News on the BDFA Charity Incorporation

The Trustees and team are pleased to advise that on 1 September 2024 the Batten Disease Family Association transitioned to a Charitable Incorporated Organisation (CIO) formed under the Charities Act…

read more

Latest News

Visit the online shop to help support the work of the BDFA

Buddy Front FINAL
Buddy Front FINAL
IMG_9546
Bandana FINAL2
Cam-orange-t-shirt-model-2
Large BDFA Awareness Ribbon
BDFA Collection Tin FINAL
BDFA Collection Bucket FINAL
Pin Badge 1 FINAL
Buddy Front FINAL IMG 9546 Bandana FINAL2 Cam Orange T Shirt Model 2 Large BDFA Awareness Ribbon BDFA Collection Tin FINAL BDFA Collection Bucket FINAL Pin Badge 1 FINAL

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