EURORDIS, European Organisation for Rare Diseases
Yann Le Cam
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 started with the Italian Telethon Foundation as grant review and Personal Award Program manager. Currently she is Scientific Director at EURORDIS.
Juliette Sénécatis working as ahealth research projects manager for EURORDIS. In RARE-Bestpractices, she is working on the involvement of patient representatives in the project and she is contributing to communication activities. She is also working on the elaboration of the patient version of the pilot clinical guideline that will be developed in the course of the project. With a background in political science, in European and international affairs as well asa Master’s degree in evaluation and management of social and health policies, Juliette has worked previously on a European project aimed at improving access to healthcare for migrants. Juliette has also coordinated actions for several non-profit organisations offering social and healthcare services.