Position: Head of Research Impact and Strategic Analysis at Fondazione Telethon
Organisation: Fondazione Telethon
Area of work: Biobanks
Member of: Community Executive Committee (CEC), Data Access Committee (DAC), Executive Management Committee (EMC)
Role in RD-Connect:
Within RD-Connect, Dr Lucia Monaco leads the work on biobanking at Fondazione Telethon in Milan, Italy.
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.