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
Christmas break
The BDFA office will be closed from 23 Dec returning on 6 Jan 2020 for the Christmas break. Thank you for all your support over the past year, it is…
Goodbye from our CEO
Dear All This is my last blog as CEO of the BDFA. It has been 19 months since I joined and my contract is ending. As I write, I have…
Juvenile CLN3 disease outreach service (juvenile Batten disease)
Building on the wealth of experience at their world-leading specialist residential service, Heather House, SeeAbility have launched a unique outreach service across the UK, available to all families, professionals and caregivers supporting someone…
LSD Collaborative Manifesto
As you may know, the Batten Disease Family Association is a member of the LSD Collaborative. The LSD Collaborative is a group of charities and patient organisations that support patients…
