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

Family Conference 2014 Video

Family Conference 2014 Video

After the success that was our Family Weekend, we have the video highlights ready for you to see! Please watch and share! https://vimeo.com/112004121  

Kidz up North – November 20th

Kidz up North – November 20th

Thursday, 20th November 2014 – 9.30am – 4.30pm EventCity, Barton Dock Road, Manchester, M17 8AS, (Near the Trafford Centre) More Info here Free entry, free parking, fully accessible! The show guide…

We need your feedback

We need your feedback

After the amazing Family Conference weekend, we would love it if you could send us your feedback. Below is a very brief feedback form to fill in. You can download…

An Amazing Weekend

An Amazing Weekend

The BDFA Family Conference is over for another year. Lots of families, children and professionals attended. Once we have had chance to re group, we shall have a full review…