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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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BDFA CEO Announcement

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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NICE HST Meeting Postponed Until Wednesday 25th April 2018

**NICE HST Meeting Postponed until Wednesday 25th April 2018** Today, we have been notified that unfortunately the next NICE HST meeting, which was due to take place on 20th March 2018 has been postponed until Wednesday 25th April 2018. We…

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Update On BDFA Chief Executive

As the 1st of March arrives, it is time to say goodbye and good luck to Andrea as she leaves the BDFA and starts her new job. The Board of Trustees and the Staff thank Andrea for her hard work,…

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NICE Say NO To The Use Of Cerliponase Alfa For Children With CLN2 (Late Infantile Batten Disease)

NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease) BDFA Summary of NICE Decision NICE ECD Report SIGN THE PETITION HERE This decision means that children diagnosed with this devastating disease in…

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