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Monica Ensini

Scientific Direcotr EURORDIS

Monica Ensini holds a PhD in Neurobiology obtained from the University of Pisa and Scuola Normale Superiore of Pisa, Italy. During her postdoctoral training at Columbia University (New York, USA) she focused her research studies on the development of the vertebrate motor system. Subsequently, her research interests extended to the development of the vertebrate forebrain while working at University College and King’s College in London and at the École Normale Supérieure in Paris. Her engagement in the rare disease field was marked by joining the Italian Telethon Foundation as scientific grant review manager, where she was also responsible for the development of the Personal Award Program of the Foundation. Currently, Monica Ensini is Scientific Director at EURORDIS (European Organization for Rare Diseases based in Paris). In this capacity she will be addressing the challenges of the rapidly evolving technological and scientific advancements as regard to their importance and applicability to the rare disease field together with the ever growing direct involvement of patients in basic and clinical research. In particular, she is also responsible for EURORDIS involvement in the EPIRARE project (European Platform for Rare Disease Registries) and the RD-Connect project, an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research.