The Batten Disease Family Association CIO (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 London 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 became a charitable incorporated organisation (CIO) in September 2024.
The BDFA’s mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.
Our objectives are to:
• To advocate for patients and families affected by Batten disease and influence the UK policy for rare disease
• To promote research into the management of Batten disease to improve care and ultimately find a cure
• To advance the education of the medical profession to increase awareness of Batten disease and reduce time to diagnosis
• To provide support for affected families to enable them to access the services they need
