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EB 2012: DEBRA International EB research conference

Every three years, DEBRA International brings together the leading EB research teams worldwide to survey progress made in developing therapies for EB and, in particular, to identify the opportunities and challenges that may arise over the next few years. This enables DEBRA International to understand expert opinion and to fine-tune its research strategy.

Following EB 2006 in Dublin, where gene therapy was centre stage, and EB 2009 in Vienna, where there was a strong showing from emerging cell therapies, EB 2012 was held in Marbella, bringing together around 120 delegates from Europe, North and South America, Australasia and Asia. In addition to scientists and clinicians, industry representatives and expert patients also played a leading role in the presentations and discussions.

These triennial conferences offer a great opportunity to see what advances have been made since the previous meeting, and EB 2012 was no exception. In his introductory speech, co-chair Prof Jouni Uitto identified some of the highlights since EB 2009, including the identification of new EB-associated genes, the increased understanding of 'modifier' genes which play a part in determining the severity of symptoms, and a number of new tools and technologies, such as TALENS and zinc finger nucleases, which create new opportunities for developing EB therapies. Most encouraging, of course, was the progress that is being made towards developing gene-correction and protein-replacement therapies and the emergence of early-stage clinical trials in cell-based therapies, including the use of fibroblasts, mesenchymal stem cells and bone marrow transplantation. From this baseline, the goal of the meeting was to derive a community consensus on the priorities for the next steps in EB research and therapy development.

Group picture of participants of EB 2012, DEBRA International EB research conference