Exciting update from Theranexus regarding clinical trial in 2023 for CLN3 Please read the article below
Thanks to Theranexus for sharing this update, and also for being one of our gold sponsors at the BDFA family conference in September. Theranexus is committed to support patients with rare neurological disorders by focusing all its research efforts on…
The BDFA is proud to offer an exciting new service for families. We have just completed our first Peer Befriending training course and have a team of peer befriender volunteers ready to support parents in the Battens community… ‘What is…
Dear all, Due to unforeseen circumstances, we have had to postpone our AGM that was being held on June 24th 2022. We are working on arranging a new date for the meeting and will communicate this new date with you…
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 awareness on June 9th! There are so many ways you…
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 the light of recent Dear Families The BDFA was…
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 Battens community! This includes to families whose child or children…
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 read the letter from Taysha Gene Therapies published in the…
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 community letter below from Taysha and reach out to us…
We are pleased to be offering three (free) training slots with Sarah Kenrick, this is for professionals working with children/young people and adults with CLN3. These training slots will be held over Zoom. If you feel this would be beneficial…
