IRDiRC has participated at the Rare2030 Panel of Experts workshop that has been recently held in Brussel, thanks to Dr. Lucia Monaco, our Chair.
Rare 2030 is a foresight study that gathers the input of a large group of patients, practitioners and key opinion leaders to propose policy recommendations that will lead us to improved policy and a better future for people living with a rare disease in Europe. This a two year project that will end in a presentation to parliament at the end of 2020 with recommendations on the most critical areas needing sound policy.
Lucia Monaco
My role in Rare 2030 regards the definition and execution of an evaluation strategy, to monitor the progress of project activities and the achievement of milestones, and to assess the project’s results.
This activity is coherent with my current role at Fondazione Telethon, where I lead the Research Impact and Strategic Analysis unit.
I am/have been involved in several European projects and initiatives, such as RD-Connect, EuroBioBank, and the European Joint Program for Rare Diseases (EJP RD). I am representing Fondazione Telethon in the International Rare Diseases Research Consortium (IRDiRC); since January 2019, I am chairing the IRDiRC Consortium Assembly.
I have previously been Fondazione Telethon’s Chief Scientific Officer for ten years, after a 20+ years’ experience as a biomedical researcher.