General: 07876 682589    |   Fundraising: 07876 682589   |   Support: 0800 046 9832  

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

Seeking Part-time CEO

Seeking part-time CEO

We would like to announce that we are looking for a new part-time CEO to take the BDFA forward. The new CEO will work 30 hours a week, in line…

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Could You Be A Trustee?

Could you be a Trustee?

The Batten Disease Family Association (BDFA) is a small, national, rare disease charity that supports families and children affected by Batten disease. Our aim is for those affected by Batten…

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Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.