The BDFA are hosting a MUM’S CHAT (for mum's of children and young people of all CLN variants) Tuesday 22nd August 8pm This will be held once a month on Zoom and is a chance for mums from the BDFA…
The Batten Disease Family Association will be holding our AGM on Saturday 26th August at 10.30am via zoom. We hope as many of our community as possible will be able to join us. More details to follow.
Dear All, It is with regret that we inform you that we have made a difficult decision to cancel the BDFA family conference later this year. We do not have the logistical capabilities to organise such a large event at…
SAVE THE DATE International Batten Disease Awareness day is Friday June 9th! Help us to raise awareness, use the #, share posts and help us to turn orange for awareness day this year! More details to follow soon! #battenday2023 #battenawareness…
Join our friendly Dads chat session on Tuesday 2nd May at 8pm on zoom. The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained parent Peer…
The BDFA held its first Peer befriending retreat this past weekend in Surrey, gathering together some of our wonderful peer befriending volunteers for some training and connection time as a team. We have also just started our second Peer Befriending…
New advance to the Theranexus and BBDF Batten-1 program for juvenileBatten disease (CLN3) Read the press release from Beyond Batten and Theranexus regarding Phase I/II trial data at the link below. https://beyondbatten.org/wp-content/uploads/2023/01/Theranexus_PR_Batten-1_Program_VDEF.pdf They are hosting a Quarterly Family Research call…
🚹 Join our friendly Dads chat session on Thursday 2nd February at 8pm on zoom. 🚹 The Dads Chat group is a chance to meet with other dads of children with Batten disease. It’s led by one of our trained…
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…
Date change SATURDAY 3rd DECEMBER 2pm Via Zoom The nominations were outstanding this year and the judges have had a tough job on their hands choosing our deserving winners and runners up for this years Pride of Batten awards. We…