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Let us guide science’s giant leaps towards concrete solutions for all people living with a rare disease.

Guidiamo i passi da gigante della scienza verso soluzioni concrete per tutti coloro che vivono con una malattia rara.

    Lucia Monaco leads the Research Impact and Strategic Analysis team at Fondazione Telethon.


    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, she has been 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 by the European patient organisation 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 development of therapeutic approaches.

    • Country: Italy
    • Organisation: Head, Research Impact and Strategic Analysis - Fondazione Telethon
    • Social media: @Telethonitalia
    • Category: Science, research and innovation