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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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