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
Cancellation of AGM on 25th April 2020
Cancellation of AGM on 25th April 2020 Dear all, It is with great regret that we, the BDFA, have had to make the disappointing decision to cancel our AGM in…
The LSD collaborative and partners Webinar about Covid-19
The LSD collaborative and partners have organised a Webinar about Covid-19 and all families are invited to attend. Monday 23rd March, 11-12pm Questions need to be submitted in advance. We…
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…
