Batten Disease Family Association

Batten Disease Family Association

Charity information

Batten Disease Family Association

The BDFA aims to be the central point of excellence in the UK for raising awareness, supporting affected familites, and facilitating research into Batten Disease.

Founded 2001

  • Mission statement

    Batten Disease is the main paediatric neuro-degenerative disorder in the UK. It affects 1:30,000 births and there are approximately 200 affected children and young adults in the UK. It does not affect any particular social or economic group but is devastating for any family living anywhere in any circumstance.

    A child affected by Batten Disease will be born apparently healthy before developing epilepsy, losing their ability to see, walk, talk and eat, as well as developing dementia, before dying a premature death between the ages of 5 – 30, depending on the type of Batten Disease they have inherited. There are three main types of Batten Disease; Infantile, Late Infantile and Juvenile Batten Disease. There is also a congenital form and other variants of the disease. There is research into all types of Batten Disease but no cure at present.

    The BDFA's vision is to bring light to Batten Disease by being the central point of excellence in the UK for supporting families affected by Batten Disease and to facilitate research into therapies and ultimately a cure.

  • Aims

    Batten Disease Family Association aims to:

    • Supporting families living with Batten disease
    • Funding research into Batten disease
    • Raising awareness of Batten disease
  • Overview

    Established: November 2001

    Registered Charity Number: 1084908

    Board members: 7

    Full time staff: 2

    Part time staff: 4

    Phone number: 01252 416110

    Address: BDFA The Old Library 4 Boundary Road Farnborough Hants GU14 6SF

    View charity accounts on the Charity Commission website
  • Batten Disease Family Support Officer

    Our vision is that every family with a child affected by Batten Disease is supported on th... More