Dr. Lucia Monaco is leading the Research Impact and Strategic Analysis team at Fondazione Telethon, an Italian charity aimed at transforming excellent research on rare genetic diseases into accessible therapies. She also chairs the International Rare Diseases Research Consortium, IRDiRC.

In her previous role as Telethon Chief Scientific Officer, she managed the Foundation’s research portfolio and contributed to developing Telethon’s goals, in collaboration with academic and commercial partners. She directed the creation of the Telethon Network of Genetic Biobanks and coordinated European initiatives such as EuroBioBank and the biobanking pillar of the European program RD-Connect.

Among other appointments, Monaco has been a member of the Horizon 2020 Advisory Group for Societal Challenge 1 – Health, demographic change and well-being and chaired the working group on rare diseases. In 2017, she received the Scientific Award from the European patient organization EURORDIS. She trained as a biochemist and molecular biologist. Prior to joining Fondazione Telethon, she led a research group at the San Raffaele Scientific Institute in Milan, Italy, following an appointment in R&D in a major Italian pharmaceutical company, with continued interest in rare genetic diseases and the development of therapeutic approaches.