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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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BDFA Newsletter – Autumn 2017

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.  

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Announcement: BDFA Chief Executive

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…

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Awareness Campaign For Childhood Dementia – Portland

Portland, a London-based public affairs and communications agency who specialise in health communications, have been developing a disease awareness campaign for childhood dementia. The aim of the campaign is to raise awareness of what childhood dementia is and the challenges…

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The Juvenile Neuronal Ceroid Lipofuscinosis And  Education Project (2014 – 2017)

Click here to download the Paper This paper addresses some findings and experiences from the Juvenile Neuronal Ceroid Lipofuscinosis and Education Project (2014 - 2017). Juvenile Neuronal Ceroid Lipofuscinosis (JNCL) is also called CLN3 disease, Spielmeyer-Vogt Syndrome and Batten Disease.…

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Snowdon By Night – 9-10th June 2018

BOOK NOW Do you want a different challenge?  Would you like to join us and see beautiful Snowdonia by moonlight and raise money for the BDFA at the same time? 9th-10th June 2018 Snowdonia National Park in North Wales is…

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Genetic Alliance Survey On Insurance

Help us produce the insurance information you need! Accessing appropriate insurance can be a significant problem for many patients and families affected by genetic conditions. Patients and families affected by genetic conditions often find it difficult or impossible to access…

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