Lucia Monaco is the current Consortium Assembly Chair of the International Rare Diseases Research Consortium (IRDiRC), where she represents Fondazione Telethon, the Italian charity committed to rare genetic diseases research. She is the head of Research Impact and Strategic Analysis and former Chief Scientific Officer of Fondazione Telethon in Milan, Italy. She previously worked as a researcher at the San Raffaele Scientific Institute in Milan and earlier she was senior researcher in the Molecular Biology Laboratory of Farmitalia Carlo Erba in Milan, Italy. She graduated in chemistry at the University of Pavia, Italy and received her training in biochemistry at the University of Iowa in Iowa City, USA and in molecular biology at the European Molecular Biology Laboratory in Heidelberg, Germany.
She is/has been member of several international committees and boards, among which: the Policy Board of the European Joint Program on Rare Diseases (EJP RD) and the Horizon 2020 Advisory Group for Societal Challenge 1 – Health, demographic change and well-being.