Batten Disease Family Association

c/o Heather House
Heather Drive
Tadley
Hampshire
RG26 4QR

Tel: 0115 965 4815
Web: www.bdfa-uk.org.uk
Best time to telephone: normal working hours

The principal aim of the Batten Disease Family Association (BDFA) is that no family will go through the devastating journey of Batten disease alone.

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

Facilities the BDFA provides currently:

• A helpline for carers and professionals.
• A website.
• Putting affected families in touch with other affected families.
• Signposting families and professionals to other supportive professionals.
• Educational conferences and supportive resources.
• Updates on research developments.
• Increasing awareness of Batten disease amongst the public, medical and research world.
• Supporting research into:
• Understanding more about the disease process so that better support can be given to those affected.
• Identifying the genes and mutations that cause the disease.
• Understanding the functions of the genes and the effect on their activities of the different mutations.
• Developing model systems for understanding the biology of the disease and what changes are significant.
• Understanding exactly how the brain is affected as a first step towards one day slowing Batten disease or stopping it.
• The development of better diagnostic tests.
• The development of potential therapies or new methods of treatment.