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🔸 SAVE THE DATE 🔸

The Batten Disease Family Association will be holding our AGM on Saturday 26th August at 10.30am via zoom. We hope as many of our community as possible will be able to join us. More details to follow.

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Conference Update

Dear All, It is with regret that we inform you that we have made a difficult decision to cancel the BDFA family conference later this year. We do not have the logistical capabilities to organise such a large event at…

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International Batten Disease Awareness Day Is Friday June 9th

SAVE THE DATE International Batten Disease Awareness day is Friday June 9th! Help us to raise awareness, use the #, share posts and help us to turn orange for awareness day this year! More details to follow soon! #battenday2023 #battenawareness…

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Join Our Friendly Dads Chat Session On Tuesday 2nd May At 8pm On Zoom

Join our friendly Dads chat session on Tuesday 2nd May at 8pm on zoom. The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer…

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First Peer Befriending Weekend Retreat

The BDFA held its first Peer befriending retreat this past weekend in Surrey, gathering together some of our wonderful peer befriending volunteers for some training and connection time as a team. We have also just started our second Peer Befriending…

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CLN3 Update, Research Call 19th Jan 2023

New advance to the Theranexus and BBDF Batten-1 program for juvenileBatten disease (CLN3) Read the press release from Beyond Batten and Theranexus regarding Phase I/II trial data at the link below. https://beyondbatten.org/wp-content/uploads/2023/01/Theranexus_PR_Batten-1_Program_VDEF.pdf They are hosting a Quarterly Family Research call…

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Join Our Friendly Dads Chat Session On Thursday 2nd February At 8pm On Zoom- Date Has Changed!

🚹 Join our friendly Dads chat session on Thursday 2nd February at 8pm on zoom. 🚹 The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained…

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Save The Date! BDFA Family Conference 2023!

Following on from our successful family conference in September, we have set the date for our Family conference in 2023! We had some wonderful feedback from the conference, so we are working hard make 2023 even better. One big change…

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BDFA Pride Of Batten Awards Presentation, SATURDAY 3rd DECEMBER

Date change SATURDAY 3rd DECEMBER 2pm Via Zoom The nominations were outstanding this year and the judges have had a tough job on their hands choosing our deserving winners and runners up for this years Pride of Batten awards. We…

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Pride Of Batten Awards 2022, Nominations Open!

We are pleased to announce that we will be running the Pride of Batten awards again this year. This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family…

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