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The BDFA Welcomes Sarah Kenrick To The Team As Our Batten Behaviour, Adults And Transitions Specialist.

Sarah is a Registered Nurse for people with Learning disabilities and has worked in the health and social care sector for over 40 years, 20 of which were as Registered Manager for SeeAbility’s Heather House in Hampshire providing specialist long…

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CLN5 Update- Neurogene NGN-101 Now Enrolling Participants At Clinical Trial Site In University Of Rochester Medical Center In Rochester, NY, USA

Neurogene Inc., a biotech company committed to developing life-changing genetic medicines for patients and theirfamilies affected by rare neurological disorders, is excited to share an important update on their development programfor CLN5, a subtype of Neuronal Ceroid Lipofuscinosis (NCL), or…

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The BDFA Family Conference Is Back In 2022

**** SAVE THE DATE **** The BDFA Family Conference is back in 2022! Saturday 11th - Sunday 12th June 2022 Due to current times, the BDFA are planning that this conference will be a hybrid event, so families can join…

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