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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

BATCure Research Consortium News

BATCure Research Consortium News

The BDFA is delighted to announce that the BATCure Research Consortium headed up by Dr Sara Mole at University College London has been awarded an EU Horizon2020 Innovation Grant of…

Board of Trustees Vacancies

Board of Trustees Vacancies

Do you, a friend, relative or colleague have the time, skills and commitment to support our work and help us achieve our vision of a world without Batten disease? We…

Disability Living Allowance (DLA)

Disability Living Allowance (DLA)

In the recent Mathieson case, the Supreme Court found that rules suspending payment of Disability Living Allowance (DLA) after 84 days in hospital breached the human rights of a severely…


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