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
We are seeking an experienced Community Fundraising Officer to join the Fundraising Team at the BDFA. The BDFA is the only patient organisation in the UK for families affected by…
Help us design our charity Christmas card for 2021! We are looking for some amazing Christmas designs from our batten community to feature on our Christmas card Be as creative…
Wow, can we talk about Sunday??!! We had 5 amazing runners in the London Marathon and 1 marvelous runner who completed it virtually in her local area. BDFA staff were…
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