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🔶 BDFA AGM SAVE THE DATE 🔶

The Batten Disease Family Association will be holding their Annual General meeting on Saturday 25th June 2022. This meeting will be held virtually via Zoom meetings. Registration details and link for meeting will follow with agenda nearer to the time.…

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LIMITED EDITION CD ANNOUNCEMENT- Pre-order Your Copy Today!

We are very excited to share the news that our Awareness day single by 'Poppy' - "When You Were With Me" will be available on LIMITED EDITION CD SINGLE on 17th June, as well as digitally on 6th June 2022.…

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Exciting News! BDFA Will Once Again Have Its Own Official Batten Disease Awareness Day Song 2022

The BDFA will once again have its own official Batten Disease Awareness Day song this year and it has been written and performed by Poppy Brownnutt, from Shipley West Yorkshire! Poppy, who is 15, wrote the song about her precious…

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International Batten Disease Awareness Day New- June 9th 2022

Here at the BDFA, we have exciting plans for awareness day and we really hope you can help support Batten disease and help us turn the UK orange to raise awareness on June 9th! There are so many ways you…

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International Ask-An-Expert: Biotechs And NCL Clinical Research: Watch Recording Here

The BDFA was delighted to join international partner BDSRA and others for an enlightening and informative international session looking at the current research and treatment landscape for Batten disease, in the light of recent Dear Families   The BDFA was…

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