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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

#raredisease Day – Our Full Support

#raredisease Day – Our Full Support

BDFA are supporting this years Rare Disease Day on February 28th. www.rarediseaseday.org 2015 marks eight consecutive, successful years of Rare Disease Day. Continuing the momentum, Rare Disease Day 2015 puts the…

New ‘Benefits Support’ Leaflet

New ‘Benefits Support’ Leaflet

This leaflet was designed to answer some of your questions about financial support available when you are caring for a child or young person living with a diagnosis of an…