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News From Neurogene

The BDFA has been asked to share some exciting news from Neurogene. If you would like to read more you can find more information at the link below the letter. Please do not hesitate to reach out to us if…

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Introducing BDFA Mum’s Chat

The BDFA are hosting a MUM’S CHAT (for mum's of children and young people of all CLN variants) Tuesday 22nd August 8pm This will be held once a month on Zoom and is a chance for mums from the BDFA…

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The Batten Disease Family Association will be holding our AGM on Saturday 26th August at 10.30am via zoom. We hope as many of our community as possible will be able to join us. More details to follow.

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Make Your Voice Heard: Take The New Rare Barometer Survey And Share Your Opinion On Newborn Screening For Rare Diseases!

Dear BDFA Families, There is a Rare Barometer survey on your opinion on newborn screening for rare diseases which closes very soon! It should take no more than 20 minutes to complete and closes on July 9, 2023.  We recognise…

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