Our Mission
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
One donation, twice the impact! The Big Give #ChristmasChallenge 2023 is here and we’re asking for your support!
Would you like to give the gift of companionship this Christmas and see your donation have twice the impact? The Big Give #ChristmasChallenge 2023 is here and we’re asking for…
Regenexbio Update meeting for CLN2 families, Wednesday 29th Nov, 12-1pm
Dear Families, Following the news two weeks ago that Regenexbio have halted enrolment into their development programmes RGX-181 and RGX-381, the BDFA would like to invite you to a call…
Managed Access Agreement for Brineura Survey Update, deadline Monday 20th November
Dear Families, Thank you to those of you who have filled out the CLN2 survey. We have received some responses from both parents and teachers. However, in order to make as…
Summary of Beyond Batten Disease Foundation quarterly Family Research Call- Phase III Batten-1 clinical trial, updates on CLN3 research
Dear Families, At 4pm CST (10pm GMT) on 15th November 2023, Beyond Batten Disease Foundation held their quarterly Family Research Call. This was led by Mary Beth Kiser (CEO), Dr…
🚹 NEXT DAD’S CHAT 🚹
Thursday 23rd November at 8pm A chance to come together on Zoom with other dads from the BDFA community and have a chat.Led by trained Peer Befriender Andrew Dawkins and…
Latest News
Next quarterly Town Hall Family Meeting
Next quarterly Town Hall Meeting Dear Families, The BDFA Team and Trustees would like to invite you to our next quarterly Town Hall Meeting at 4.30pm on Friday 24th November.…
Speech and Language in individuals with Batten Disease (CLN2 and CLN3)- An international study
Dear CLN2 and CLN3 families, Lottie Morison is a speech pathologist and researcher leading a project on speech and language in individuals with CLN2/CLN3. She has had an encouraging response so…
REGENXBIO Halts Enrolment into Their AVV Programme for CLN2 – Q3 Earnings Conference Call- Statement by the Batten Disease Family Association
As part of its third-quarter earnings release on Wednesday, November 8, 2023, REGENXBIO announced a corporate restructuring that includes halting enrolment of patients into their development programmes RGX-181 and RGX-381…
Survey now online- Re-submission survey for Managed Access Agreement
SURVEY NOW ONLINE Dear Parents, As requested, we have generated an online version of both the family and education surveys to generate data for the Brineura re-submission process. The format we have…
Beyond Batten family meeting-Phase III Batten-1 clinical trial, answer your questions, and provide updates on CLN3 research
Dear families, Please find details and link below to attend a meeting being held by Beyond Batten on November 15th at 9pm GMT, giving updates on research and sites for…
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