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Taysha Gene Therapies Invites CLN1 Community Feedback

Taysha Gene Therapies is planning a webinar and invites the CLN1 disease community to submit questions about the TSHA-118 CLN1 Batten disease clinical trial to the patient advocacy groups BDSRA and BDFA.  Please submit your questions by February 20th, 2022 to Lisa at, admin@bdfa-uk.org.uk at…

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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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THANK YOU TO BDSRA ATTENDEES

Here at the BDFA we want to say a MASSIVE THANK YOU to all of our families in the UK who attended the BDSRA annual family conference this past weekend, and thank you to all the other families all over…

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2021 BDSRA Annual Family Virtual Conference- Sign Up Now

The BDFA is delighted to partner again with the BDSRA (Batten disease support and research association) for their annual conference that is yet again online. As last year, we will be sending out conference boxes full of activities and conference…

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Pre Order Beautiful Girl By David McGovern In Aid Of The BDFA Now!

The official Single of the Batten Disease Awareness campaign in now available to pre order on iTunes and pre save on Spotify!! After reaching No.2 in the Official UK Physical Charts with his cover of East 17’s classic Stay Another…

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NOTICE OF ANNUAL GENERAL MEETING

Notice is hereby given that the 2020 Annual General Meeting of the Batten Disease Family Association will be held via Zoom video-conferencing on Saturday 12 June 2021 at 10:00. Given that the Covid-19 restrictions are only in process of being…

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HAVE YOU SIGNED UP YET? ‘13 In Whatever Way To Raise 13k For Awareness Day

HAVE YOU SIGNED UP YET???? ‘13 in whatever way to raise 13k for Awareness Day ’We have launched an exciting fundraising event for Awareness Day to raise much-needed funds for the BDFA. It is an event that we hope the…

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International Batten Disease Awareness Day News 2021

The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many of our families as possible will join in with them.…

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The Amber Trust Launches Major New Music Service, With Music In Mind In Association With The Amber Trust

With Music in Mind by Amber Trust Monday 16 November 4-5pm With Music in Mind is The Amber Trust's pioneering new music service for families who have a visually impaired child with neurodegenerative disease, such as Batten disease. This webinar…

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