The Batten Disease Family Association CIO (BDFA) is the only patient organisation in the UK for families affected by Batten disease, a rare and terminal neurodegenerative condition that affects children and young adults.
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.
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
The BDFA supports and advocates for families from the point of diagnosis and has grown over the last three years to offer additional support services for families. We are growing our science and research function and have implemented a long-term strategy to develop our advocacy, education and research capabilities.