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 James Yarrow. If you are interested in joining the session…
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. The purpose of the meeting is to provide families with…
Great news! We have decided to re-open the nominations for this year’s Pride of Batten awards! Unfortunately, we have not had the response of nominations like previous years, so to give you all more of a chance to nominate, we…
Thursday 2nd November 8pm (until 9:30pm) (for mums of children and young people of all CLN variants) This is held once a month on Zoom and is a chance for mums from the BDFA community to come together in a…
This year the 18th International Congress on NCL was in Hamburg, Germany and was attended by our Head of Scientific Affairs, Dr Jo Nightingale. Here is her initial report. Before the main event there was a young investigators meeting and…
We’re proud to be one of the 41 small charities supported by Global’s Make Some Noise this year. Global is home to some of the UK’s biggest and best-loved radio stations including Capital, Heart, Classic FM, Smooth Radio and Radio X. On…
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…
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 All, It is with regret that we inform you that we have made a difficult decision to cancel the BDFA family conference later this year. We do not have the logistical capabilities to organise such a large event at…
