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Interim CEO Announcement

We are pleased to announce that the Trustees of the BDFA have invited Liz Brownnutt to step up to the role of Interim CEO until the end of February 2024 and she is delighted to accept.  We believe that Liz…

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BDFA Report Of The 17th NCL Meeting

Dr Joanna Nightingale attended the 17th Translational Research Conference for the Management of NCLs in Chicago, the report for families from this meeting is now available to read. Please click on the link below to read the report. If anyone…

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Batten Disease Family Association AGM Saturday 26th August 2023

NOTICE OF MEETING NOTICE IS HEREBY GIVEN that the 2023 Annual General Meeting of the Batten Disease Family Association will be held via a Zoom video call between 10:30-11:30 am on Saturday 26th August. The meeting is scheduled to last…

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Clinical Trial Update – CLN2, REGENEXBIO’s First-in-human Gene Therapy Program

We are very pleased to share the following developments on REGENEXBIO’s first-in-human gene therapy program for the treatment of CLN2 Batten disease. REGENEXBIO announced that the first patient was dosed in the Phase 1/11 ocular trial of RGX-381 at Great…

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