Role in RD-Connect:
Within RD-Connect, Lucia leads the work on biobanking at Fondazione Telethon in Milan, Italy.
Dr Lucia Monaco graduated in chemistry at the University of Pavia and was trained in biochemistry at the University of Iowa, Iowa City, USA as well as in molecular biology at the European Molecular Biology Laboratory in Heidelberg, Germany. Having over 20 years of experience as a researcher in both the industrial and academic settings, she took the role of the Chief Scientific Officer at the Fondazione Telethon. Through her engagement in International Rare Diseases Research Consortium (IRDiRC), she has supported rare disease research on the international level.
Lucia Monaco has developed Fondazione Telethon’s Rare Disease Programme and linked it with academic and commercial partners, and with European patient organisations. She has engaged in scientific and patient-centred initiatives, such as IRDiRC, ICORD, and EURORDIS. Her work helped develop key research infrastructure for rare diseases, especially those related to biobanking and data sharing via EuroBioBank and RD-Connect. In 2017, she won the EURORDIS Scientific Award for cutting edge scientific developments in rare diseases.