Flaminia Macchia

  • Rare Diseases International Executive Director

Flaminia Macchia photo

Flaminia Macchia joined Rare Diseases International (RDI) as Executive Director in June 2020 to help achieve RDI’s mission to be a strong common voice on behalf of people living with a rare disease around the world..

As a patient with the rare disease ulcerative colitis, as well as through her different professional roles, Flaminia has been active in the rare disease patient community for over twenty years.

Before joining RDI, Flaminia worked for four years as Patient Engagement Lead at Vertex Pharmaceuticals (2015-2019) and for one year at UCB Biopharma (2019-2020).

Prior to that, Flaminia headed the EURORDIS European and International Public Affairs Team in Brussels from 2004 to 2015, after working for EURORDIS as a consultant since 2000.

Before joining EURORDIS, Flaminia worked for over ten years in EU affairs at the European Commission, at the European Parliament as an assistant to an Italian MEP, and in the health team of a leading EU policy consultancy firm in Brussels.

Flaminia holds an honours degree from the Université Libre de Bruxelles in Political Science with a specialisation in Middle Eastern Politics, and a Master of Arts in International Relations with a specialisation in EU Institutions and Middle Eastern Politics from the London School of Economics.

An Italian national, Flaminia speaks Italian, French, English, and Spanish.

Email: flaminia.macchia@rarediseasesint.org

 
 
La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases