The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.
The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.
The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Latest News
🔶 BDFA AGM SAVE THE DATE 🔶
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…
LIMITED EDITION CD ANNOUNCEMENT- pre-order your copy today!
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…
Exciting news! BDFA will once again have its own official Batten Disease Awareness Day song 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!…
International Batten Disease awareness day New- June 9th 2022
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…
International Ask-An-Expert: Biotechs and NCL clinical research: Watch recording here
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…
Latest News
Registration for the BDSRA USA annual family conference open!
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…
Bertie’s Helpers reaches milestone of 100 deliveries
We are so pleased to share this update from the amazing Bertie’s Helpers!! Bertie’s Helpers has now delivered 100 Tesco food deliveries, including good quality ready-meals, to families in the…
Important Announcement regarding gene therapy development and follow up Ask an Expert Session
Dear all, We have been working with our international partners, the BDSRA, BDSRA Australia and Baza Retkih Bolesti to dissect recent developments in the batten treatment space. You will have…
Important CLN1 & CLN7 update from Taysha Gene Therapies
CLN1 & CLN7 Communities, We would like to bring to your attention this update regarding Taysha Gene Therapies involvement in both CLN1 & CLN7. We encourage you to read the…
Ever wondered how Peer Befriending helps parents?
One parent who previously benefitted from having a Peer Befriender said… “My Peer befriender has been an absolute lifeline. Since the diagnosis I have felt very cut off and not…
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