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.

The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases