After the success of last years BDFA Christmas card design competition, we are launching it for 2022! Make your design colourful and Christmassy and send it into us and your design could be chosen for our Christmas card this year.…
Has someone gone the extra mile to support you or a member of your family with Batten disease? This is your opportunity to highlight the very best practice across the UK and thank them in a really special way! We…
We are pleased to announce that we will be running the Pride of Batten awards again this year. This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family…
Every emotion resonated at our family conference in Stratford Upon Avon last weekend, the first in five years. The joy of reunion, the power of connection, the comfort of camaraderie… it was such a special weekend with tears and laughter…
Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below
Today is #InternationalNeonatalScreeningDay and the BDFA are proud to be members of the UK NBS Collaborative working towards meaningful change and extension to the UK newborn bloodspot programme. #INSD2022 Launched last year, the aim of this day is to raise…
We hope you will join us in wishing a warm welcome to Dr Joanne Nightingale as our new BDFA Scientific Officer. Jo has with a wealth of experience in scientific research and has worked in the lab doing pre-clinical research…
UPDATE NEW DATE of Annual General Meeting of the Batten Disease Family Association Notice is hereby given that the 2021 Annual General Meeting of the Batten Disease Family Association to be held via Zoom video-conferencing on Saturday 9th July 2022,…
Thanks to Theranexus for sharing this update, and also for being one of our gold sponsors at the BDFA family conference in September. Theranexus is committed to support patients with rare neurological disorders by focusing all its research efforts on…
The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…