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Thank you!

Over 295,500 people signed the petition calling on NICE to approve the treatment for CLN2 and NHS England to fund the treatment. This is an amazing achievement so thank you to everyone who signed and promoted the petition. The BDFA is a small charity focused on a rare disease but this result shows that people across the UK and the rest of the world really care about children affected by Batten disease. We are immensely grateful to everyone who took part.

The petition was delivered to the government at No 10 Downing Street on Thursday 8 June. But it doesn’t stop there! BDFA is keeping the petition open so we can gather more support and show everyone how important this is so please keep collecting signatures. Thank you!

Sign the Petition HERE

You can view the Press Release here

Donate to the work of the BDFA

With your support we can help support families living with the devastating diagnosis of Batten disease

The BDFA receives NO funding from Government and are only able to carry out our work because of the strong commitment of our volunteers and fundraisers.

Thank you so much for your support

How your donation can help

£5 a month
provides a support and information
folder for a newly diagnosed family

£20 a month

helps to run our family support services

£50 a month
enables us to run training workshops
for professionals to educate them on
Batten disease