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 the line.
More news to follow soon, here is the link to NHS England’s announcment today.
Thankyou so so much for all the support!
With your support we can help support families living with the devastating diagnosis of Batten disease
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