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About us
Who we are
The Batten Disease Family Association (BDFA) is a family centred organisation, set up 26 years ago by parents of children with Batten disease. The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.The BDFA provides emotional and practical support to families, delivered through our family support team. We are there at the very painful and confusing time around diagnosis and go on to support families through their journey, attending meetings with families, running workshops for professionals and facilitating a community for families to connect to each other. Families are grieving from the day they get the diagnosis and the BDFA is there to support from that point and through the loss of a child and beyond. As a result of the pressures of looking after a profoundly disabled children, families face financial challenge and we support them our family grant scheme. As the only patient organisation in the UK, we play a crucial role in lobbying government around access to treatments, shaping policy and supporting research into all forms of Batten disease. We have a wider impact on the rare disease sector working with 6 other national organisations to support families with rare diseases and influence work around access to treatments and early diagnosis.
Our 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.
