General: 07876 682589    |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
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 us…

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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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BDSRA Online Conference July 10th – 12th 2020

BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…

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International Batten Disease Awareness Day- Tuesday 9th June- Our Plans

International Batten Disease Awareness Day Tuesday 9th June 2020 4 DAYS TO GO! We are getting very excited about Batten disease awareness day next Tuesday 9th June which we are sharing with international peers. We are kicking off our awareness…

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BDFA 2020 Conference News

Conference News Postponement of our face to face conference   As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for…

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***IMPORTANT BDFA MEETING NEWS** Virtual ‘family’ Meeting To Share Our Future Plans And Financial Position

  Virtual ‘family’ meeting to share our future plans and financial position  Friday 1st May from 2-3.30pm The BDFA is pleased to invite you to a virtual ‘family’ meeting on Zoom to discuss our latest accounts (year end August 2019)…

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Welcome To Becky Bower

A big welcome to Becky Bower, who will be covering Laura while she is on maternity leave from May A message from Becky,   I just wanted to take the time to quickly introduce myself to you all. As you…

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** BDFA NEWS ** A Message From Laura Lee Our Amazing Clinical Nurse Specialist

** BDFA NEWS ** A message from Laura Lee our amazing Clinical Nurse Specialist Hello, I wanted to share with you all the exciting news that I am expecting a baby boy in June and will be going on Maternity…

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