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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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Thank You Lucy! – Office Manager Update

We are sorry to announce that Lucy Roose the BDFA Office Manager will be leaving the Batten Disease Family Association on 29 June to start her theological training to become a Church of England priest. While we are saddened that…

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Petition Delivered To Number 10 Downing Street

Thank you! Over 295,500 people signed the petition calling on NICE to approve the treatment for CLN2 and NHS England to fund the treatment. This is an amazing achievement so thank you to everyone who signed and promoted the petition.…

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Update To Our Small Grants Programme

It is with regret that BDFA has decided to suspend our Small Grants Programme of financial assistance to families until further notice. This is not a decision that has been taken lightly and has been made for the good of…

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Registration For NCL 2018 Is NOW OPEN!

Registration for NCL 2018 is now open on the conference website: http://www.ncllondon2018.com Please contact conference organisers Bioscientifica who can provide details of discounted rates for families: ncl2018@bioscientifica.com

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