Learning and development news TRAINING FOR PROFESSIONALS SESSIONS, Oct 2023 The BDFA is pleased to offer training to, educators and paid carers, over the next three dates. This is for professionals who work with children/young people and adults who have…
We are pleased to announce that the Trustees of the BDFA have invited Liz Brownnutt to step up to the role of Interim CEO until the end of February 2024 and she is delighted to accept. We believe that Liz…
Dr Joanna Nightingale attended the 17th Translational Research Conference for the Management of NCLs in Chicago, the report for families from this meeting is now available to read. Please click on the link below to read the report. If anyone…
NOTICE OF MEETING NOTICE IS HEREBY GIVEN that the 2023 Annual General Meeting of the Batten Disease Family Association will be held via a Zoom video call between 10:30-11:30 am on Saturday 26th August. The meeting is scheduled to last…
We are very pleased to share the following developments on REGENEXBIO’s first-in-human gene therapy program for the treatment of CLN2 Batten disease. REGENEXBIO announced that the first patient was dosed in the Phase 1/11 ocular trial of RGX-381 at Great…
The BDFA has been asked to share some exciting news from Neurogene. If you would like to read more you can find more information at the link below the letter. Please do not hesitate to reach out to us if…
The BDFA are hosting a MUM’S CHAT (for mum's of children and young people of all CLN variants) Tuesday 22nd August 8pm This will be held once a month on Zoom and is a chance for mums from the BDFA…
The Batten Disease Family Association will be holding our AGM on Saturday 26th August at 10.30am via zoom. We hope as many of our community as possible will be able to join us. More details to follow.
Dear BDFA Families, There is a Rare Barometer survey on your opinion on newborn screening for rare diseases which closes very soon! It should take no more than 20 minutes to complete and closes on July 9, 2023. We recognise…
We have been made aware that some of our emails this week have not been getting through to you. We are working with our email provider to see if there is an issue and to sort this ASAP. If you…