Together, the BDFA, with our Global Research Initiative (GRI) partners, is delighted to announce the inaugural GRI Grant Round is now inviting Expressions of Interest. We seek to support the most promising research ideas worldwide that address key research questions and…
Batten Disease Family Association AGM Wednesday 21st August 2024 NOTICE OF MEETINGNOTICE IS HEREBY GIVEN that the 2024 Annual General Meeting of the Batten Disease Family Association will be held via a Zoom video call between 19:00-20:00 pm on Wednesday 21st…
The BDFA is pleased to announce that we are partnering with our global counterpart organisations to offer in-kind support of a Batten Disease Global Research Initiative.At their recent Annual Family Conference in St Louis, the BDSRA announced the formation of…
Dear CLN3 families, As you know we are in regular contact with the groups involved in the Miglustat trial. Today we received this communication from Theranexus: “We do continue to work on the Phase 3 Study, as you may have…
Would you like to train to become a BDFA Peer Befriender and help support another parent of a child with Batten disease on their journey? We are looking for Dads from our BDFA Community to train to become Peer Befrienders…
04/07/2024 Dear Families, Following the Nice Committee meeting on 12th June for the re-evaluation of Brineura, we wanted to make you aware that NICE have decided to pause the formal evaluation process while they assess new evidence from BioMarin. NICE…
With your support we can help support families living with the devastating diagnosis of Batten disease
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