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. 

BATCure partners made efforts during the entire duration of the project to ensure that the voice of patients and affected families was central to this major research initiative. In the first 2 years, Laura Codd, the BDFA BATCure Project Administrator, worked to establish links between the consortium, patients and their families and over 20 Patient Organisations and Foundations worldwide. Heather Band, former BDFA Scientific Officer, undertook the role of work package lead for the BDFA. We would like to thank all the patient organisations, research foundations, patients and affected families for your support throughout the project. Especially those who took part in the family survey the results are available to download below.

Final Project Report

“The project has exceeded expectations with some exciting new science discovered along the way. All partners met regularly to share and discuss progress. Over the 3 years we have developed excellent working relationships and I know that collaborations will continue beyond the end of this award. It has been a lot of hard work but something that we will be drawing on in our research for many years to come.”

Professor Sara E. Mole, BATCure Coordinator and Professor in Molecular Cell Biology at UCL

We are pleased to present the final lay report (English) and the Executive Summary (English, German, French, Italian, Spanish and Chinese) which highlight the amazing progress has been made in areas of drug discovery and the gene therapy approaches. The group have utilised new technologies in science and diagnosis to great effect to benefit all those affected by this devastating disease.

We have a limited number of printed copies of the Project Final report (English), the Executive Summaries and the BATCure Family Survey which can be obtained by contacting

Further information on Batten disease and NCL support and research associations can be found on Professor Mole’s NCL Resource website