General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
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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BDFA Office Is Moving To A New Home

We are so excited to annouce that the BDFA will have a new home as of Monday 6th September just a short walk from Kings Cross station in London. Boxes are packed and ready to go, and we can't wait!…

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The BDFA Family Conference Is Back In 2022

**** SAVE THE DATE **** The BDFA Family Conference is back in 2022! Saturday 11th - Sunday 12th June 2022 Due to current times, the BDFA are planning that this conference will be a hybrid event, so families can join…

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Epilepsy Masterclass- With Dr Ruth Williams

Join Dr Ruth Williams, Consultant Children’s Neurologist for a session on epilepsy and Batten disease. Monday 9th August @ 5pm, on Zoom Please RSVP to admin@bdfa-uk.org.uk for the link. Hope to see you there!

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Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

All donations help us to provide the best support we can to families affected by Batten Disease.

Please do leave us a note about the donation or fundraising so we know what you have been

doing to support us and who to thank.

Thank you for your support.