The International Rare Diseases Research Consortium (IRDiRC) is pleased to announce the election of Dr Lucia Monaco, Head of the Research Impact and Strategic Analysis at Fondazione Telethon in Italy, as the next Chair of the IRDiRC Consortium Assembly. Dr Monaco will follow the footsteps of Dr Christopher Austin, Director of the National Center for Advancing Translational Sciences (NCATS), USA. Dr Monaco’s term will run from January 1, 2019 until December 31, 2021.
Dr Monaco described her vision for IRDiRC: “Last year the IRDiRC Consortium Assembly formulated an inspirational vision, which tackles the need of people living with a rare disease to have access to therapies and diagnoses in the shortest possible time. I feel deeply inspired by the urgency conveyed by our vision and believe that such urgency must motivate and inspire all our actions. We now need to proceed at full speed along this ambitious road. In my view, in order to accomplish our plans with the rapidity our vision calls for, we need to work along three guiding principles: reach out, influence, and act together. I know I can count on the invaluable contribution and expertise of everyone engaged in the IRDiRC community to help us move forward.”
Dr Monaco has a long track record of working in the field of rare diseases and a longstanding involvement at the Fondazione Telethon. Previously Chief Scientific Officer, she directed the creation of the Telethon Network of Genetic Biobank. She was also the Administrative and General Coordinator of EuroBioBiank, the leader of the biobanking pillar of RD-Connect, and an active member of the Horizon 2020 Advisory Group for Societal Challenge – Health, demographic change and well-being. Dr Monaco will be actively engaged in the upcoming European Joint Programme for Rare Diseases (EJP-RD), set up to help fulfill IRDiRC’s ambitious goals.
IRDiRC wishes to thank Dr Austin for his leadership and commitment to IRDiRC in setting up the goals for 2017-2027 and guiding the Committees’ actions and activities, and is looking forward to Dr Monaco’s energy, wisdom, and engagement in taking IRDiRC to new heights.