Family Area

The BATCure flyer is available in the following languages: English, Danish, Dutch, French, German, Italian, Latvian, Russian, Spanish and Swedish. Please click on each language for download. 

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: lauracodd@bdfa-uk.org.uk. If you are a bereaved parent and would like to participate, please also contact Laura.