The Second NICE Committee Meeting to assess the use of Brineura on the NHS- 5th September 20 August, 2024 20/08/2024 Dear Families, We wanted to provide you with an Find out more
Global Update - Clinical Trial in CLN5 disease update from Neurogene Inc. 12 August, 2024 We are pleased to advise that Neurogene Inc. have announced Find out more
Batten Disease Global Research Initiative Grants- Now Open for Expressions of Interest until AUGUST 30th 29 July, 2024 Together, the BDFA, with our Global Research Initiative (GRI) partners Find out more
BDFA AGM- Wednesday 21st August 2024, 7pm 29 July, 2024 Batten Disease Family Association AGM Wednesday 21st August 2024 NOTICE Find out more
BDFA and the Batten Disease Global Research Initiative 19 July, 2024 The BDFA is pleased to announce that we are partnering Find out more
Latest communication from Theranexus for CLN3 18 July, 2024 Dear CLN3 families, As you know we are in regular Find out more
We are looking for Dads from our BDFA Community to train to become Peer Befrienders and help support other dads of children with Batten disease. 8 July, 2024 Would you like to train to become a BDFA Peer Find out more
UPDATE ON BRINEURA RE-EVALUATION PROCESS 4 July, 2024 04/07/2024 Dear Families, Following the Nice Committee meeting on 12 Find out more
LSD Collaborative Community Survey 2024 28 June, 2024 Dear Families, The LSD Collaborative is a group of 11 Find out more
Next quarterly Town Hall Meeting at 7pm on Thursday 4th July 2024 24 June, 2024 Dear Families, The BDFA Team and Trustees would like to Find out more
Schedule for upcoming CLN group meetings 24 June, 2024 The CLN group meetings have been running for 6 months Find out more
Bereaved Parents Club Podcast, Episode #6 Giving back: Batten Disease and Befriending 11 June, 2024 Lynsey Dent, one of our BDFA Peer Befrienders, speaks on Find out more
