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Who we are and what we do
The Batten Disease Family Association (BDFA) is a national charity which aims to support families, raise awareness and facilitate research into the group of devastating neurodegenerative diseases commonly known as Batten Disease. We are based in Hampshire but work with children, young people, families and professionals across the UK.
We were in formed in 1998 with the help of SeeAbility and Contact-a-Family, by a small group of parents of children with Batten Disease . We were granted Registered Charity status in 2001 and the work of the charity has continued to go from strength to strength.
The BDFA receives no funding from statutory services so we rely on voluntary donations to continue our essential work. Please visit our "How you can help" section to see how you can help us to bring light to Batten Disease.
BDFA Spring 2012 Batten Bulletin
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