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Who We Are

The Batten Disease Family Association (BDFA) is the only UK Charity dedicated to supporting families, raising awareness and facilitating research into the group of diseases known as the NCLs or Batten Disease.
We receive no funding from statutory sources and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers. Contact us to discuss what you can do to Bring Light to Batten Disease.
The Batten Disease Family Association (BDFA) is committed to ensuring that no family faces the journey with Batten Disease alone.
We aim to facilitate research into Batten Disease to further knowledge about the disease, potential therapies and ultimately a cure.
In 2012 the BDFA co-hosted NCL2012, the 13th International Conference on Neuronal Ceroid Lipofuscinoses (Batten Disease).
We receive no funding from statutory sources and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers. Contact us to discuss what you can do to Bring Light to Batten Disease.

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Find out more about BDFA

You can help bring a difference to children and young adults affected by Batten Disease across the UK by supporting the BDFA’s work. From as little as £2 a month you can help to bring light to Batten’s.

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Batten Tweets

  • "@KStott85 not a problem you are doing invaluable work on the RTs for us thank you very much for helping us raise awareness...." May 17. 01:21
  • "@KStott85 we had a glorious day last year just wishing for no rain this year, but I know whatever the weather the atmosphere will be grea..." May 17. 01:03
  • "If you can't make our annual walk at Cannock Chase plse RT 2 raise awareness & funds 4 the fight against #battendisease t.co/r..." May 16. 23:42