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…
Following on from our successful family conference in September, we have set the date for our Family conference in 2023! We had some wonderful feedback from the conference, so we are working hard make 2023 even better. One big change…
Every emotion resonated at our family conference in Stratford Upon Avon last weekend, the first in five years. The joy of reunion, the power of connection, the comfort of camaraderie… it was such a special weekend with tears and laughter…
The BDFA are so excited to be able to bring this event to you all again after a few years break, it will be so good to get together in person.You will have noticed the change in date for the…
**** SAVE THE DATE **** The BDFA Family Conference is back in 2022! Saturday 11th - Sunday 12th June 2022 Due to current times, the BDFA are planning that this conference will be a hybrid event, so families can join…
Here at the BDFA we want to say a MASSIVE THANK YOU to all of our families in the UK who attended the BDSRA annual family conference this past weekend, and thank you to all the other families all over…
The BDFA is delighted to partner again with the BDSRA (Batten disease support and research association) for their annual conference that is yet again online. As last year, we will be sending out conference boxes full of activities and conference…
BDSRA online conference July 10th - 12th 2020 SIGN UP DEADLINE TUESDAY 9TH JUNE We are official partners of the BDSRA (Batten Disease Support and Research Association) in the US as they are holding their annual family conference entirely online.…
Conference News Postponement of our face to face conference As I am sure you will understand, we have made the difficult decision to postpone our conference due to Covid19. The future is uncertain and October feels too soon for…
BDFA Financial and Organisation Update May 2020 We held a zoom meeting earlier this month to discuss the BDFA’s accounts (year-end August 2019) and we were joined by 11 parents as well as professionals working in the Batten arena.…
