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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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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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Brineura In The Eyes Funding Target Smashed!

The BDFA is absolutely delighted to announce that through the incredible hard work of families, the target for the compassionate use programme at Great Ormond Street (GOSH) has been not just met but exceeded. The total amount raised is £212,749.51…

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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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National Day Of Reflection 2021

National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved whatever the cause, especially those within our own batten community.…

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NEW BDFA CHAIR

We are delighted to announce that Dr Zlatko Sisic has become the new BDFA Chair. Zlatko has joined the Board of BDFA as the Medical and Scientific Lead in February 2020. He graduated from the Medical School in Belgrade in…

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Thank you for your support.