Our Mission
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 cure.
Our Plans
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
Could you be a Trustee?
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten…
NEWS!! Absolutely delighted to announce that Brineura is approved!!
Life-changing treatment on the NHS for children with rare, deadly disease We are beyond delighted to announce that Brineura has been approved. Further details to come. Families have been absolutely…
Music Project for Children with CLN3
Latest research has shown the importance of singing with Juvenile Batten Disease. Do you know someone with a diagnosis of JNCL? Would they be interested in taking part in a…
Scientific Officer Update
We are very sorry to announce that our Scientific Officer, Heather Band, left the BDFA on 7th June 2019 after almost seven years with the organisation. We thank Heather for…
