Isolated but not alone: the response to the pandemic in the story of PAGs from the Italian case history to the Global Health Summit "Rome Declaration"

Abstract

Struggling with practical problems such as the sudden cancellation of scheduled visits and exams and a sense of abandonment and uncertainty. This is how the "ordinary" patients lived the period of the health emergency in Italy. At the same time, civic and rights protection associations, since the beginning, have been active with a sense of responsibility, creativity, and energy, often revealing themselves to be the only point of reference and the only service available to citizens. This is the double side of the coin, in the implications of the pandemic on chronic and rare patients, which emerged from the XVIII National Report on Chronic Policies of Cittadinanzattiva, presented on October 13th, 2020, and entitled: "Isolated but not alone: the response to the pandemic in the story of Patients Advocacy Groups (PAGs)". The Report arised from the story of 34 Italian associations of patients with chronic and rare diseases who adhered to the National Coalition of Associations for Patients suffering Chronic Diseases (CnAMC) of Cittadinanzattiva. This experience thanks to Active Citizenship Network was first socialized on the occasion of the 15th European Patients’ Rights Day held on May 5th & 6th, 2021, and then brought to the attention of the leaders of the G20 and other states, gathered together with the heads of international and regional organizations on the occasion of the Global Health Summit held in Rome on May 21, 2021.