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
BDSRA’s 2021 Family Conference
BDSRA's 2021 Family Conference DEADLINE TO SIGN UP TO GET A CONFERENCE BOX IS MONDAY 28TH JUNE. We are pleased to announce that the BDFA is delighted to partner again…
Head of Family Support and Advocacy
We are looking for a Head of family support and advocacy to join our growing team. This is an opportunity for a passionate and dynamic professional to lead and develop family…
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…
Sheyne & Amber’s Story
“On a day to day basis we don’t think or talk about Batten disease unless we need to. We don’t let it rule our lives.” Chantelle Cammack, mother of Sheyne,…
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