Happy #BattenDay2022 to all of the families in our Batten community and particularly thinking of those who are remembering their loved ones today. There is already a distinctly 'orange' buzz on social media. We are kicking off the day with…
Thursday 9th June 2022 6pm -7pm This session is open to all members of the wider family who have been touched by the loss of a loved one to Batten disease. Please email admin@bdfa-uk.org.uk for the link to join. If…
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 25th June 2022, 2pm. AGENDA Introduction and Welcome 2. AGM Minutes year end 2020 – To…
The BDFA are running two sessions for families this year on awareness day. At 4pm we are holding a special (and probably very orange!) edition of our virtual family cuppa get together on Zoom.Join us and tell us what you…
The Batten Disease Family Association will be holding their Annual General meeting on Saturday 25th June 2022. This meeting will be held virtually via Zoom meetings. Registration details and link for meeting will follow with agenda nearer to the time.…
We are very excited to share the news that our Awareness day single by 'Poppy' - "When You Were With Me" will be available on LIMITED EDITION CD SINGLE on 17th June, as well as digitally on 6th June 2022.…
The BDFA will once again have its own official Batten Disease Awareness Day song this year and it has been written and performed by Poppy Brownnutt, from Shipley West Yorkshire! Poppy, who is 15, wrote the song about her precious…
Here at the BDFA, we have exciting plans for awareness day and we really hope you can help support Batten disease and help us turn the UK orange to raise awareness on June 9th! There are so many ways you…
The BDFA was delighted to join international partner BDSRA and others for an enlightening and informative international session looking at the current research and treatment landscape for Batten disease, in the light of recent Dear Families The BDFA was…
We are pleased to be able to offer families in our Batten community the chance to virtually attend the BDSRA family conference again this year. The last 2 years have been brilliant events and the BDSRA work so hard to…