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 CEO Announcement
The Board of Trustees are very pleased to announce the appointment of Samantha Barber as the BDFA’s new Chief Executive. Samantha will join the BDFA as Chief Executive on 21st…
NICE HST Meeting Postponed until Wednesday 25th April 2018
**NICE HST Meeting Postponed until Wednesday 25th April 2018** Today, we have been notified that unfortunately the next NICE HST meeting, which was due to take place on 20th March…
Update on BDFA Chief Executive
As the 1st of March arrives, it is time to say goodbye and good luck to Andrea as she leaves the BDFA and starts her new job. The Board of…
NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease)
NICE say NO to the use of Cerliponase Alfa for children with CLN2 (Late Infantile Batten disease) BDFA Summary of NICE Decision NICE ECD Report SIGN THE PETITION HERE This…
