The Batten Disease Family Association (BDFA) was created in 1998 to support and help families, carers and professionals, who have contact with a child with Batten disease. The association has been built up and is run by volunteers who are mainly parents of children with Batten disease.

The BDFA is established to:

• Preserve and protect the health and promote the welfare of persons affected by all types of Neuronal Ceroid Lipofuscinosis (NCL) commonly known as Batten disease
•  To advance the education of the medical profession and the general public on the subject of Batten disease and its implications for the family
•  To promote research into the management of Batten disease and to publish the useful results thereof and to support organisations promoting research into Batten disease

Batten disease is a group of fatal paediatric disorders that profoundly affect children and young people. Affected children may develop severe epileptic fits, become blind and endure a prolonged period of physical and mental decline before they die. The disorder also exerts a heavy burden upon the families of affected individuals and the health and social service professionals who look after them. Collectively, this is the most common inherited neurodegenerative disorder of childhood with an incidence of up to 1 in 12,500 live births. Nevertheless, Batten disease remains poorly understood and therapeutic options remain severely limited. The recent discovery of the genetic basis of Batten disease is providing New Hope for understanding this devastating disorder and working toward clinical trials.

Batten Disease Family Association

c/o Heather House

Heather Drive

Tadley

Hampshire

RG26 4QR

Website: www.bdfa-uk.org.uk