*** UPDATE *** BDFA MEDICAL WEBINAR- CHANGE OF TIME Wednesday 22nd April- NEW TIME 4PM Dear All, Just to confirm our BDFA medical webinar tomorrow. Please note the change in time of 4pm. Unfortunately Professor Gissen has had…
BDFA MEDICAL WEBINAR Wednesday 22nd April- 11am We are holding our first BDFA Medical Webinar next Wednesday at 11am. We welcome our guests for this event Professor Paul Gissen and clinical nurse specialists Laura Lee and Becky Bower. They will be discussing…
** Some brighter news ** The board of the BDFA is pleased to announce an urgent family grant scheme to support families caring for a family member with Batten disease with the challenges faced due to Covid-19. We have…
Cancellation of AGM on 25th April 2020 Dear all, It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in April. We hope that you understand, in line with organisations…
The LSD collaborative and partners have organised a Webinar about Covid-19 and all families are invited to attend. Monday 23rd March, 11-12pm Questions need to be submitted in advance. We understand it's an incredibly stressful time for you all. Please…
Notice of Annual General Meeting of the Batten Disease Family Association NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held on Saturday 25th April 2020 12pm in the Davies Room The…
BDFA CEO APPOINTMENT The Board of Trustees of the BDFA is very pleased to announce the appointment of Amanda Mortensen as the BDFA’s new Chief Executive. As many of you know, Amanda has served as a trustee and then as…
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten disease to maximise their quality of life and secure the…
Life-changing treatment on the NHS for children with rare, deadly disease We are beyond delighted to announce that Brineura has been approved. Further details to come. Families have been absolutely incredible in their strength and resilience in getting this over…
BDFA Announces Departure of CEO Sam Barber We are very sorry to announce that our CEO Sam Barber will leave the BDFA at the end of June as her first year's contract ends. During her time with us, Sam has…