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.
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.
As it is nearly Mother’s Day, we would like to show our support for mothers in the toughest of times. Please help us by sharing a photo of you and…
Many of you know Harriet Lunnemann who is the BDFA support and advocacy worker. Not only does Harriet travel the country supporting families on behalf of the BDFA, she also…
Have a look at the Education Page on our website for more information on the up and coming Education days. Join us and staff from New College Worcester, The Royal…