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.

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases