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
BDFA AGM News!
Notice of Annual General Meeting of the Batten Disease Family Association NOTICE IS HEREBY GIVEN that the Annual General Meeting of the Batten Disease Family Association will be held on…
CEO Announcement
BDFA CEO APPOINTMENT The Board of Trustees of the BDFA is very pleased to announce the appointment of Amanda Mortensen as the BDFA’s new Chief Executive. As many of you…
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…
