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
London Marathon Walk
Join us for this year’s London Marathon Walk on 22nd September 2018, taking in some of the capital’s iconic sights and less-visited corners. The route passes locations used in 26…
Thank You Lucy! – Office Manager Update
We are sorry to announce that Lucy Roose the BDFA Office Manager will be leaving the Batten Disease Family Association on 29 June to start her theological training to become…
Petition Delivered to Number 10 Downing Street
Thank you! Over 295,500 people signed the petition calling on NICE to approve the treatment for CLN2 and NHS England to fund the treatment. This is an amazing achievement so…
Update to our Small Grants Programme
It is with regret that BDFA has decided to suspend our Small Grants Programme of financial assistance to families until further notice. This is not a decision that has been…
