Our mission is to enable everyone who is affected by Batten disease to live life to the full and to secure the care and support they need until we find a cure. The BDFA offers informed guidance and support to families and the professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.
a. Employ a full-time support and advocacy worker
b. Operate a Freephone helpline
c. Commission the first Batten disease Clinical Nurse Specialist in the UK
d. Operate a small grant scheme to help meet the needs of caring for a child or young person living with Batten disease.
e. Increase our research funding in the UK and worldwide into potential therapies and ultimately a cure.
Latest News
Epilepsy Masterclass- With Dr Ruth Williams
Join Dr Ruth Williams, Consultant Children’s Neurologist for a session on epilepsy and Batten disease. Monday 9th August @ 5pm, on Zoom Please RSVP to admin@bdfa-uk.org.uk for the link. Hope…
THANK YOU TO BDSRA ATTENDEES
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,…
Brineura in the eyes funding target smashed!
The BDFA is absolutely delighted to announce that through the incredible hard work of families, the target for the compassionate use programme at Great Ormond Street (GOSH) has been not…
William’s Story
“We have enough worry to deal with daily. Constant battles are exhausting and so unnecessary” William is 18 and has CLN3. His mother, Maria Minns, talks about how she has…
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