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Today we joined forces with Rett UK to write to the Chancellor, Rishi Sunak, highlighting the funding gap for small, national VITAL rare disease charities like the BDFA.

We are at the #invisiblefrontline and are #NeverMoreNeeded but we miss out on Covid-19 government support.



The Batten Disease Family Association is one of many small national charities that supports people with rare diseases. As we are national, it is very difficult for us to access local community funds. This is where the majority of emergency funding for charities, including government funding, is being directed.

We have written to Rishi Sunak, The Chancellor of The Exchequer, to highlight the issue and are backing the campaign #NeverMoreNeeded. We are also contacting other MPs we have links with.


If you would be happy to share a copy of the letter with your MP please do share and let us know.

See the Letter on the link Small National Charities Falling Through The Gaps

We are the #invisiblefrontline.

 For more information email Amanda directly at

Thank you.

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