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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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CLN2 Cerliponase Alfa FAQ

What is cerliponase alfa? Cerliponase Alfa, which is marketed as Brineura, is the first disease-modifying treatment for any type of Batten disease. Children with CLN2 Batten disease have a genetic mutation which prevents them from producing enough of an enzyme…

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NICE Decision

NICE Decision - 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is a dreadful blow to all those with children on treatment,…

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We Are Pleased To Announce That We Are Now A Proud Member Of The Disabled Children’s Partnership

We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children, young people and their families in England. We know that…

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Notice Of Annual General Meeting Of The Batten Disease Family Association

The 2018 AGM of the Batten Disease Family Association is taking place on 24 Nov at 1.30pm at Resource for London. During the meeting the election of the Chair of Trustees and are-election of a trustee will take place as…

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Santa In The City 5k Run

Get into the Festive mood by running through some iconic London locations dressed as Santa! This fun event is an ideal way to raise vital funds for the BDFA and to start your festive activities. Each place costs £23 +…

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NICE HST Update

We are pleased to say that a further meeting of the NICE Highly Specialised Technology (HST) Committee was held in Manchester yesterday about the Brineura treatment for CLN2. The meeting was attended by two patient experts who are both mothers…

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NICE HST Meeting Postponed

We have been notified that unfortunately the next NICE HST meeting due on 25th July has been postponed. We are waiting to hear when it has been rescheduled for and will inform everyone when we know. We understand how frustrating…

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Summer Newsletter 2018

You can read it here Dear Friend Welcome to the latest newsletter from the Batten Disease Family Association. It is the first since I joined as Chief Executive in May and it’s full of news and reminiscences as this year…

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London Marathon Walk

Join us for this year’s London Marathon Walk on 22nd September 2018, taking in some of the capital’s iconic sights and less-visited corners. The route passes locations used in 26 films, from classics including Chariots of Fire and The Italian…

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