General: 07354 486 586   |   Fundraising: 07511 821 181   |   Support: 0800 046 9832  
BDFA CHRISTMAS CARDS ON SALE NOW!!

       Our amazing Christmas cards are on sale now in the BDFA shop on the website.  You can buy the cards in a pack of 10, including 5 designs by our winner, 16 year old Annabelle, and 5…

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Do You Have A Young Person In Full Time Education Coming Up To The Age Of 16 Or Beyond? You May Be Able To Claim Universal Credit Worth A Significant Extra Income

Do you have a young person in full time education coming up to the age of 16 or beyond? You may be able to claim Universal Credit worth a significant extra income for your young person. Jayne Knights (benefits consultant)…

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Join Our Team- Family Support Worker & Community Fundraiser

Fancy working for the BDFA? We currently have 2 job opportunities open to join our team. We are looking for a family support worker and a community fundraiser. Community Fundraiser Permanent, Part-time, 21 hours a week https://www.charityjob.co.uk/jobs/the-batten-disease-family-association/community-fundraiser/779545?tsId=2 Family Support Worker…

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Pride Of Batten Awards 2021

We are pleased to announce an exciting new annual BDFA initiative, the Pride of Batten Awards This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family member with…

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Join Our Team- Community Fundraiser

We are seeking an experienced Community Fundraising Officer to join the Fundraising Team at the BDFA. The BDFA is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that affects…

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BDFA Christmas Card Competition

Help us design our charity Christmas card for 2021! We are looking for some amazing Christmas designs from our batten community to feature on our Christmas card Be as creative as you like, paint, draw, do it as a team,…

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London Marathon 2021

Wow, can we talk about Sunday??!! We had 5 amazing runners in the London Marathon and 1 marvellous runner who completed it virtually in her local area. BDFA staff were there supporting with some of the runners family and friends,…

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Tech For All From The Guide Dogs

Tech For All - ipads for children and young people with a vision impairment We are really pleased to let you all know of an amazing new scheme being run by The Guide Dogs for the Blind Association called Tech…

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Welcome To Sian Fisher, Head Of Family Support

The BDFA is delighted to announce the appointment of Sian Fisher as the charity’s new head of Family Support and Advocacy. Sian will be responsible for all aspects of support and will be tasked with developing our support and advocacy…

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New Office

We have moved!!! Yesterday we got the keys to the new lovely BDFA office near Kings Cross in London. It needs a little organising to make it feel like home but we are all really excited!

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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