The BDFA’s mission is to enable everyone who is affected by Batten disease to live life to the full and secure the care and support they need until we find a cure.
The BDFA offers informed guidance and supports families and professionals who work with them as well as actively increasing awareness of the disease and funding future research to identify potential therapies and ultimately a range of cures.
The BDFA works across the rare disease sector to influence change in policy and processes as a collective voice.
Lord Ian Botham speaking about Batten disease, the work of the Batten Disease Family Association and raising awareness
The BDFA is delighted to announce the appointment of Sian Fisher as the charity’s new head of Family Support and Advocacy.Sian will be responsible for all aspects of support and…
We have moved!!! Yesterday we got the keys to the new lovely BDFA office near Kings Cross in London. It needs a little organising to make it feel like home…
We are so excited to annouce that the BDFA will have a new home as of Monday 6th September just a short walk from Kings Cross station in London. Boxes…
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