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
CLN2 Cerliponase Alfa FAQ
What is cerliponase alfa? Cerliponase Alfa, which is marketed as Brineura, is the first disease-modifying treatment for any type of Batten disease. Children with CLN2 Batten disease have a genetic…
NICE Decision
NICE Decision - 22.02.2019 We are very disappointed that NICE has published their decision not to recommend Cerliponase alfa, also known as Brineura, as a treatment for CLN2. This is…
We are pleased to announce that we are now a proud member of the Disabled Children’s Partnership
We are a proud member of the Disabled Children’s Partnership – a growing coalition of more than 60 organisations – campaigning for improved health and social care for disabled children,…
Notice of Annual General Meeting of the Batten Disease Family Association
The 2018 AGM of the Batten Disease Family Association is taking place on 24 Nov at 1.30pm at Resource for London. During the meeting the election of the Chair of…
