Dear All, I am saddened to announce that Sian Fisher, our wonderful Head of Family Support and Advocacy, is leaving the BDFA in early June. Sian is moving to Winston’s Wish, the UK’s childhood bereavement charity, as a bereavement support worker. Sian explains…
We are pleased to announce the appointment of Sarah Chandler to the role of Fundraising Assistant at the BDFA. Sarah lives in Manchester and she will be working full-time at the BDFA to assist with various aspects of the fundraising…
BDFA Family Conference 2023 NewsFamily Tickets available now! The BDFA are excited to be holding our Family conference again in October 2023. We have made some changes to the plan for this year, which we hope, will make the weekend…
We are delighted to announce that the BDFA has won a Big Give Award for our Big Give Christmas Challenge Campaign 2022! The BDFA won the award for demonstrating key learnings from our campaign. We raised 70% over our target…
We believe it's important to work together with our global patient advocacy partners to share important research updates in a unified, timely, and factual manner. Our network of organizations has worked together on this statement to share with our families…
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…
An important official update from REGENXBIO on gene therapy developments for CLN2 Batten disease, read the press release here or via the link. December 21, 2022 at 7:05 AM EST RGX-181 and RGX-381 are potential one-time AAV Therapeutics for the…
BIG GIVE CHRISTMAS CHALLENGE 2022 – ONE DONATION, TWICE THE IMPACT! MIDDAY TUESDAY 29TH NOVEMBER TO MIDDAY TUESDAY 6TH DECEMBER We are very excited to share with you that the Batten Disease Family Association has been selected to participate in…
Has someone gone the extra mile to support you or a member of your family with Batten disease? This is your opportunity to highlight the very best practice across the UK and thank them in a really special way! We…
We are pleased to announce that we will be running the Pride of Batten awards again this year. This is your opportunity to highlight the very best practice across the UK. Who is going the extra mile for your family…
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