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Huge Congratulations To The Wonderful Bertie’s Helpers On The Milestone Of 200 Deliveries So Far!

Bertie’s Helpers provides a week’s food shop delivered to the door for families with children with Batten disease who are going through a time of crisis. Mimi and Andrew Petty set up Bertie’s Helpers in memory of their son Bertie…

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The BDFA MUM’S CHAT Thursday 2nd November 8pm (until 9:30pm)

Thursday 2nd November 8pm (until 9:30pm) (for mums of children and young people of all CLN variants) This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a…

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Managed Access Agreement – Re-evaluation Submission Meeting

Dear Families, Managed Access Agreement – Re-evaluation Submission We would like to invite all Parents and family members from the CLN2 community to take part in a meeting to discuss the BDFA’s submission to NICE for the re-evaluation of Brineura,…

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Enter The BDFA Design A Christmas Card Competition 2023!

We are looking for some amazing Christmas designs from our Batten community to feature on this years Christmas card! After the success of the past 2 years with our Christmas card design competition, it is that time of year again!…

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REGENXBIO’s Investigational Gene Therapy Programs For The Treatment Of CLN2,”RGX-181″

Recently we shared some updates on REGENXBIO's investigational gene therapy programs for the treatment of CLN2 Batten disease. We are pleased to share this letter with the CLN2 Batten disease community, where REGENXBIO reports some initial interim data from a…

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International Congress On NCL, Hamburg, Germany 2023

This year the 18th International Congress on NCL was in Hamburg, Germany and was attended by our Head of Scientific Affairs, Dr Jo Nightingale. Here is her initial report. Before the main event there was a young investigators meeting and…

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