Monica Ensini

Monica EnsiniMonica Ensini holds a PhD in Neurobiology from the University of Pisa and Scuola Normale Superiore of Pisa, Italy. During her postdoctoral training at Columbia University (New York, USA), her research studies focused 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. Monica formerly held the position of Scientific Director at EURORDIS (European Organisation for Rare Diseases) based in Paris. In this capacity, she addressed the challenges of the rapidly evolving technological and scientific advancements as regards their importance and applicability to the rare disease field, together with the ever-growing direct involvement of patients in basic and clinical research. Monica moved to Newcastle University’s Institute of Genetic Medicine in November 2013.

A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases