Following on from our successful family conference in September, we have set the date for our Family conference in 2023! We had some wonderful feedback from the conference, so we are working hard make 2023 even better. One big change…
An important official update from REGENXBIO on gene therapy developments for CLN2 Batten disease, read the press release here or via the link. December 21, 2022 at 7:05 AM EST RGX-181 and RGX-381 are potential one-time AAV Therapeutics for the…
BIG GIVE CHRISTMAS CHALLENGE 2022 – ONE DONATION, TWICE THE IMPACT! MIDDAY TUESDAY 29TH NOVEMBER TO MIDDAY TUESDAY 6TH DECEMBER We are very excited to share with you that the Batten Disease Family Association has been selected to participate in…
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…
Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below
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…
Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for the meeting and will communicate this new date with you…
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…