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
First NHS England Brineura Infusion!
Yesterday, Wednesday 13 Nov 2019, the first infusion of Brineura was given to a child at Great Ormond Street Hospital as part of the new Managed Access Agreement between BioMarin…
Seeking part-time CEO
We would like to announce that we are looking for a new part-time CEO to take the BDFA forward. The new CEO will work 30 hours a week, in line…
Dementia Strikes Children Too Campaign Update
As you recall, the Dementia Strikes Children Too campaign has been working to raise awareness of the conditions that affect our children and campaign for better access to services and support for…
Could you be a Trustee?
The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten…
