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Notice Of Annual General Meeting Of The Batten Disease Family Association 2020

Notice of Annual General Meeting of the Batten Disease Family AssociationNOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held virtually via Zoom,at 1pm on Saturday 21st November 2020.We are hoping to…

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Save Our Children’s Sight Campaign- Children With CLN2 Batten Disease On Brineura

Following on from yesterday’s announcement about the restarting of our research function, the BDFA is pleased to announce our collaboration with a group of families who have children with CLN2 and are accessing enzyme replacement therapy (ERT). This campaign is…

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Brineura® Recommended For Use In Scotland

Life-changing drug for rare and fatal form of childhood dementia made available in Scotland for the first time Today, the Scottish Medicines Consortium has recommended the use of Brineura® (cerliponase alfa) in the NHS to treat CLN2, a form of Batten…

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The BDFA Is Excited To Announce Their Support Of A Brand New, Family-led Project.

Mimi and Andrew Petty have set up Bertie’s Helpers to honour their son Bertie, who died of CLN1 Batten Disease, aged 4, a year ago. Bertie loved his bunny toys so Mimi and Andrew knew they had to use the…

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Looking For A New Fundrasing Role?

Come and join our team as our new Head of Fundraising.The BDFA is looking to diversify its income streams, secure its future and grow the support it can offer to families.We are looking for a strong fundraiser who has a…

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National Lottery Fund Award

We are very pleased to share with our community that the BDFA has successfully secured a grant from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Huge thanks to @TNLCommunityFund and @dcmsgovuk for helping us continue…

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BDFA INSTAGRAM UPDATE! #bdfa_battendiseaseuk

BDFA INSTAGRAM UPDATE! After a LOT of back and forth and trying to gain access to the BDFA instagram account, we have had to create a new account, so please follow us and tag the new #bdfa_battendiseaseuk https://www.instagram.com/bdfa_battendiseaseuk/ Come and…

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Dont Forget Batten Disease Awareness Day- Tuesday June 9th 2020

Dont Forget Batten Disease Awareness Day Tuesday June 9th 2020

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BDFA Joined Forces With Rett UK Highlighting Funding Gap For Vital Small Rare Disease Charities During COVID-19

Today we joined forces with Rett UK to write to the Chancellor, Rishi Sunak, highlighting the funding gap for small, national VITAL rare disease charities like the BDFA. We are at the #invisiblefrontline and are #NeverMoreNeeded but we miss out…

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Cancellation Of AGM On 25th April 2020

Cancellation of AGM on 25th April 2020 Dear all, It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in April. We hope that you understand, in line with organisations…

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