General: 07354 486586   |   Fundraising: 07745 210212   |   Support: 0800 046 9832  
BDFA Family Conference In Stratford Upon Avon, Thank You!

Every emotion resonated at our family conference in Stratford Upon Avon last weekend, the first in five years. The joy of reunion, the power of connection, the comfort of camaraderie… it was such a special weekend with tears and laughter…

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Notice Of Annual General Meeting Of The Batten Disease Family Association

Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to be held via Zoom video-conferencing on Saturday 25th June 2022, 2pm. AGENDA Introduction and Welcome 2. AGM Minutes year end 2020 – To…

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ITS AWARENESS DAY THIS WEEK!!!!

The BDFA are running two sessions for families this year on awareness day. At 4pm we are holding a special (and probably very orange!) edition of our virtual family cuppa get together on Zoom.Join us and tell us what you…

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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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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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Important Announcement Regarding Gene Therapy Development And Follow Up Ask An Expert Session

Dear all, We have been working with our international partners, the BDSRA, BDSRA Australia and Baza Retkih Bolesti to dissect recent developments in the batten treatment space. You will have read the letter from Taysha Gene Therapies published in the…

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Ever Wondered How Peer Befriending Helps Parents?

One parent who previously benefitted from having a Peer Befriender said…  “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not wanted to socialise or see anybody. It’s so helpful to…

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Training For Educators With Batten Behaviour, Adults And Transitions Specialist Sarah Kenrick

We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…

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Would YOU Like To Be A PEER BEFRIENDER?

The BDFA are proud to launch a new Peer Befriending service to help support families in a way that only other parents of children with Batten Disease will be able to do. We’re so excited to be now seeking our…

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