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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. They are hosting a Quarterly Family Research call…

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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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Would You Like To Become A BDFA Peer Befriender? Could You Give Support To Another Family Living With Batten Disease?

Why not kick off 2023 with a new challenge to help support other Batten families! The course starts on Tuesday 24th January 2023, where you will have expert training and become a vital part of our wonderful Peer befriending volunteer…

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An Important Official Update From REGENXBIO On Gene Therapy Developments For CLN2 Batten Disease

An important official update from REGENXBIO on gene therapy developments for CLN2 Batten disease, read the press release here or via the link. December 21, 2022 at 7:05 AM EST RGX-181 and RGX-381 are potential one-time AAV Therapeutics for the…

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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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Exciting Update From Theranexus Regarding Clinical Trial In 2023 For CLN3

Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below

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Welcome To Dr Joanne Nightingale As Scientific Officer To The BDFA

We hope you will join us in wishing a warm welcome to Dr Joanne Nightingale as our new BDFA Scientific Officer. Jo has with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research…

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Update From Theranexus On A New Treatment For CLN3

Thanks to Theranexus for sharing this update, and also for being one of our gold sponsors at the BDFA family conference in September. Theranexus is committed to support patients with rare neurological disorders by focusing all its research efforts on…

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The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…

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BDFA AGM Postponed

Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for the meeting and will communicate this new date with you…

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