Flaminia Macchia | Chief Operating Officer
ORPHANET-AISBL

Flaminia currently serves as the Chief Operating Officer of the Orphanet-AISBL, and as Senior Policy Advisor to different organisations on an independent basis. Flaminia has a broad range of experiences from the patient community, the private sector, as well as the EU institutions. Indeed, Flaminia has been active in public health at European and international levels for 25 years, with a focus on rare diseases. She most recently was the Head of Global Rare Disease Policy at Astra Zeneca, after serving as Senior Global Patient Partnership Director at Roche. Prior to that, Flaminia was the Executive Director of Rare Diseases International (RDI), the leading global rare disease patient organisation. Under Flaminia's leadership, the rare disease community achieved its first ever United Nations Resolution on "Addressing the Challenges of Persons Living with a Rare Disease and their Families" and expanded collaborations with the World Health Organisation and other global stakeholders. Before joining RDI, Flaminia served in global patient engagement roles at Vertex pharmaceuticals and UCB Biopharma. Flaminia started her journey in public health in 2000, as the European - and progressively International - Public Affairs Director at EURORDIS-Rare Diseases Europe, where she headed the Public Affairs Team of Eurordis until 2015. Prior to that, Flaminia has been working in a leading consultancy firm in Brussels, in the European Commission and the European Parliament after starting her carreer as a journalist covering the Israeli-Palestinian conflict, based in Jerusalem. Flaminia holds a degree in Political Sciences with a specialisation in Middle Eastern Politics.