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Beyond Batten Family Meeting-Phase III Batten-1 Clinical Trial, Answer Your Questions, And provide Updates On CLN3 research  

Dear families, Please find details and link below to attend a meeting being held by Beyond Batten on November 15th at 9pm GMT, giving updates on research and sites for the Batten-1 (Miglustat) Phase III clinical trial. This meeting is…

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Nomination Have Re-opened! Pride Of Batten Awards

Great news! We have decided to re-open the nominations for this year’s Pride of Batten awards! Unfortunately, we have not had the response of nominations like previous years, so to give you all more of a chance to nominate, we…

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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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Pride Of Batten Awards 2023 Nominations Are Open!

Nominate here Nominations for the Pride of Batten awards 203 are now open!

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October 6th Is Make Some Noise Day – Save The Date!

We’re proud to be one of the 41 small charities supported by Global’s Make Some Noise this year. Global is home to some of the UK’s biggest and best-loved radio stations including Capital, Heart, Classic FM, Smooth Radio and Radio X. On…

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