Stefano Benvenuti is Head of Public Affairs at Fondazione Telethon (Italy) since 2021. He represents Fondazione Telethon in the International Consortium for Personalized Medicine (ICPerMed) and in the International Rare Diseases Research Consortium (IRDiRC). He co-chairs the ICPerMed Working Group on Health Economic Value of Personalised Medicine Approaches and represents Fondazione Telethon in the Executive Committee of the European Joint Programme on Rare Disease (EJP-RD https://www.ejprarediseases.org/). He is also member of the Italian National Committee on Rare Disease.
After graduating in International Cooperation for Development at the University of Bologna in 2007 he started as a consultant project manager of EU funded projects. In 2010 he joined the healthcare department of Regione Veneto working as EU project specialist where he contributed to re-design the regional system of participation in EU funded programs. During this period he also completed a master degree in Health Technology Assessment at Università Cattolica in Rome.
Being an experienced manager of EU funded project and an expert of EU research policy, he joined Fondazione Telethon in 2016 to set-up the EU affairs office and coordinate the participation of Fondazione Telethon in European and International initiatives. In 2018 he took the role of Global Partnership Manager.
At Fondazione Telethon he currently coordinates the project “Sequencing of newborn genome: feasibility and clinical, ethical, psychological and economic implications” co-funded by the Lombardy Region.