About Batten Disease

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At the AGM in October, the BDFA agreed its first Mission statement setting out its plans and a new Vision:

‘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.’

This means that over the next 5 years the BDFA will continue to optimise the direct support it gives affected families.  The BDFA now plans to expand into more indirect support and focus on making sure that the professionals around the affected families have the correct tools to help them. The BDFA also plans to actively increase the awareness of Batten Disease generally, contributing to national decisions on management of the disease and increase facilitating and help co-ordinating UK and worldwide clinical and research developments.    

Over the last 10 years, research has developed significantly and much more is understood about the disease with many more gene variants of the disease identified. For most Batten Disease types, research is at or will come to a point of needing to trial different therapies over the course of the next decade, both in the laboratories and clinically. The BDFA plans to contribute significantly to the course of these developments, particularly in the UK. At the same time, the UK public services are all looking now at ways in which they can help manage the disease and need that national voice, which the BDFA plans to develop.