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…
**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…
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,…
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…
Our Autumn Newsletter is available to download and read, if you want a hard copy, please contact admin@bdfa-uk.org.uk Click here to read.
It is with sadness that the BDFA Board of Trustees announces the departure of Andrea West as CEO of the Batten Disease Family Association, effective from the 1st March 2018. Since September 2010, Andrea has played a critical role in…