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Recruitment Of BDFA CEO

Following our previous announcement (you can read here) that our current CEO Andrea West will be leaving the BDFA at the beginning of March, we are looking to recruit a committed and passionate advocate and CEO to replace her and…

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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

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 synonymous with…

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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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Brineura – Update

Despite the hopeful news of a European licence for Brineura - the new and only treatment for children diagnosed with CLN2 (Late Infantile Batten disease) - NHS England has now denied access to this only hope for children and families…

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Starlight Ball 2017 – Thank You

On a beautiful June evening we were lucky enough to host our very first Starlight Ball.  It happened to be held on awareness day.  We were thrilled to see so many people support the BDFA and also have a fantastic time…

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Awareness Day 2017 – 9th June

On the 9th June, we would like to mark Batten Disease Awareness Day and we would love for you to help us turn the world orange! Without awareness our job of securing vital services for families and essential research into potential…

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Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.