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The BATCure Family Survey is now live!

The BATCure survey is now available online in 10 European languages! If you are a parent/carer of an affected child, young person or adult then you should have received an email with a link inviting you to take part. This survey is designed to explore the perspective of families affected by all forms of Batten disease, gathering your thoughts about research and clinical trials to help develop and plan for future treatments. It will take around 15 minutes to complete and the findings will feed into the Batten disease research taking place as part of the BATCure project.

If you haven’t received the link or if you would like to request a paper copy of the survey then please contact Laura Codd If you are a bereaved parent and would like to participate, please also contact Laura.

BATCure has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 666918. – To find out more about the project visit:

Make a donation:

To make a donation to the BDFA please click the button below which will take you Paypal.

You can also TEXT DONATE 

Text the words BDFA15 £2 / £5 / £10 to 70070

All donations help us to provide the best support we can to families affected by Batten Disease.

Thank you for your support.