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 range of cures.
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
Katie’s Fundraising Story
Katie’s Fundraising Story My family has recently found out devastating news that my amazing nephew has a terminal disease, CLN6 Battens disease, which will progressively take his vision, motor and…
International Batten Disease Awareness Day News 2021
The BDFA team recently had a meeting to plan events around this year’s Awareness Day! The following are ideas that we came up with and we hope that as many…
National Day of Reflection 2021
National Day of Reflection 2021 On this national day of reflection, one year since the first lockdown began on 23rd March 2020, we are remembering all those have been bereaved…
NEW BDFA CHAIR
We are delighted to announce that Dr Zlatko Sisic has become the new BDFA Chair. Zlatko has joined the Board of BDFA as the Medical and Scientific Lead in February…
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