The Batten Disease Family Association (BDFA) is a family centred organisation, set up 22 years ago by parents of children with Batten disease. It continues to lead on lived experience and 60 per cent of our board are parents. The BDFA provides emotional and practical support, delivered through our team of two support workers who cover the UK. We also have a specialist Batten nurse, based at Great Ormond Street. 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 everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.