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…
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 +…
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…
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…
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…
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…
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…
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.…
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
The Board of Trustees are very pleased to announce the appointment of Samantha Barber as the BDFA’s new Chief Executive. Samantha will join the BDFA as Chief Executive on 21st May 2018. Prior to joining us, she is taking the…
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