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Scientific Officer Update

We are very sorry to announce that our Scientific Officer, Heather Band, left the BDFA on 7th June 2019 after almost seven years with the organisation. We thank Heather for her professionalism, dedication and all her hard work on many…

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Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day; thank you for all your support. We have put together…

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This survey was developed by a US-based CLN1 family advocacy group, Taylor’s Tale, as an important part of an international project to better understand and advance CLN1 disease clinical care. All answers will be kept confidential and anonymous. Summary results…

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