We are very pleased to share with our community that the BDFA has successfully secured a grant from the Coronavirus Community Support Fund, distributed by The National Lottery Community Fund. Huge thanks to @TNLCommunityFund and @dcmsgovuk for helping us continue…
BDFA INSTAGRAM UPDATE! After a LOT of back and forth and trying to gain access to the BDFA instagram account, we have had to create a new account, so please follow us and tag the new #bdfa_battendiseaseuk https://www.instagram.com/bdfa_battendiseaseuk/ Come and…
Dont Forget Batten Disease Awareness Day Tuesday June 9th 2020
Today we joined forces with Rett UK to write to the Chancellor, Rishi Sunak, highlighting the funding gap for small, national VITAL rare disease charities like the BDFA. We are at the #invisiblefrontline and are #NeverMoreNeeded but we miss out…
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…
The BDFA office will be closed from 23 Dec returning on 6 Jan 2020 for the Christmas break. Thank you for all your support over the past year, it is very much appreciated. Everyone at the BDFA wishes you a…
Dear All This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have two quotes going through my mind as they have been…
Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone with juvenile Batten disease (CLN3). Sarah Kenrick is the Outreach Liaison Nurse…
As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients with Lysosomal Storage Disorders (LSD). This group works together on…
With your support we can help support families living with the devastating diagnosis of Batten disease
Thank you for making a donation to the work of the BDFA.
The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.
Thank you so much for your support
How your donation can help
£5 a month
provides a support and information
folder for a newly diagnosed family
£20 a month
helps to run our family support services
£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease