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
Materials for Awareness Day 2019
Thank you to everyone who has been in contact about Awareness Day on Friday 7 June. It is great to hear about all your plans to mark this important day;…
CLN1 Family Survey
This survey was developed by a US-based CLN1 family advocacy group, Taylor’s Tale, as an important part of an international project to better understand and advance CLN1 disease clinical care.…
Batten Disease Awareness Day 7 June 2019
The UK Batten Disease Awareness Day will take place on Friday 7 June 2019. This year it is crucial that it is as impactful as possible. We need families, friends…
New video for Dementia Strikes Children Too Campaign
The BDFA is proud to be part of the 'Dementia Strikes Children Too' collaboration with Niemann-Pick UK and the MPS Society, and BioMarin Europe Ltd. The collaboration has launched a…
