The first meeting of the BATCure group took place at UCL in London on January 27-29. It was a very exciting to finally be starting on the project with over 30 scientists, research students and clinicians attending from Denmark, Germany, Italy, Latvia, Spain, Sweden and the UK.

The BDFA are an integral part of the project to provide the patient voice and Heather Band, BDFA Scientific Officer talked about our part in the work and to introduced the BDFA. Several groups taking part are new to the field of Batten research and were keen to hear about family experiences and how important research is to our community.