Domenica Taruscio, Director of the National Centre for Rare Diseases, at the Italian National Institute of Health, Rome (Italy). For decades, her efforts have been mainly directed to face the many and complex challenges posed by rare diseases. She has addressed them from various facets from science to society; she authored about 100 indexed scientific papers, in addition to many international reports and book chapters.

Scientific coordinator of several European projects on rare diseases, e.g. EUROPLAN, EPIRARE; RARE-Bestpractices; co-ordinator of the Work-packages "Registries" in RD-Connect, "Rare Diseases" in ADVANCE-HTA, "State-of-the-art of rare disease research funding: analysis and conclusions for the future" in E-RARE.

Member at the Committee for Orphan Medicinal Products-EMA (2000-2009); Expert Member at European Commission Experts Group on Rare Diseases (2004 up to date); Expert Member European Commission “Health Research” Advisory Group (2010-2013); co-chair of the Working Group "Registries and natural history" in IRDiRC. Past-President of ICORD.