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Join Us For Parent Led Zoom Meeting, Understanding Blended Diets For Children With A Gastrostomy

Join us for this parent led session to give other parents an insight to a blended diet and a family’s personal journey, enabling you to explore and share your experiences around the topic. Hosted by Holli Longley and Sarah Kenrick…

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Neurogene Announces Business Update And 2024 Outlook, CLN5 Program Update

CLN5 Program Update Neurogene has completed enrolment of Cohorts 1 and 2 in the ongoing Phase 1/2 clinical trial for CLN5 Batten disease, and interim clinical data are expected in the second half of 2024. Neurogene is currently enrolling a…

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New CLN Group Meetings                                Facilitated By Sarah Kenrick And Mimi Petty

Dear Parent’s, I have enjoyed speaking to most of you over the past 7 months and many of you have said how you would like to have informal meetings specific to your child’s CLN diagnosis, so Mimi Petty - Peer…

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Next Mums Chat, Wednesday 17th Jan, 8pm

Join us for the next Mums chat! WEDNESDAY 17th JAN, 8pm on Zoom This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a relaxed setting and get…

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Update On The Ongoing Gene Therapy Trial For Treating CLN7 Batten Disease, Hosted By Elpida Therapeutics

Elpida Therapeutics will be hosting an open virtual meeting via Zoom on Thursday,January 18, from 3-4 p.m. EST (8-9pm UK time), to provide an update on the ongoing gene therapy trial for treating CLN7 Batten disease, which has been led…

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Pedal4Memories Launches Arthur’s Gift Initiative

The BDFA are really proud to share this fantastic new initiative from the Dodkin family through their Pedal4Memories cause. They have set up ‘Arthur’s Gift’ for siblings of children with Batten disease, to show that they are ‘loved, appreciated and…

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