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.
Our Autumn Newsletter is available to download and read, if you want a hard copy, please contact email@example.com Click here to read.
It is with sadness that the BDFA Board of Trustees announces the departure of Andrea West as CEO of the Batten Disease Family Association, effective from the 1st March 2018.…
Portland, a London-based public affairs and communications agency who specialise in health communications, have been developing a disease awareness campaign for childhood dementia. The aim of the campaign is to…
Click here to download the Paper This paper addresses some findings and experiences from the Juvenile Neuronal Ceroid Lipofuscinosis and Education Project (2014 - 2017). Juvenile Neuronal Ceroid Lipofuscinosis (JNCL)…