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.
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.
We are pleased to say that a further meeting of the NICE Highly Specialised Technology (HST) Committee was held in Manchester yesterday about the Brineura treatment for CLN2. The meeting…
We have been notified that unfortunately the next NICE HST meeting due on 25th July has been postponed. We are waiting to hear when it has been rescheduled for and…
You can read it here Dear Friend Welcome to the latest newsletter from the Batten Disease Family Association. It is the first since I joined as Chief Executive in May…