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Mariano Votta corresponding author
Maira Cardillo
Michaela Papavero


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.

patients with chronic and rare diseases, Patients Advocacy Groups, Chronic Policies, Italy, European Union, civic participation, citizens’ engagement, patients’ rights

Article Details

Supporting Agencies
The authors would like to thank the CnAMC colleagues, starting from Tiziana Nicoletti, Coordinator of the Chronicity Policies of Cittadinanzattiva. The authors would also like to thank the supporters of the last two editions of the European Patients' Rights Day. In particular, the 2021 Edition of the European Patients' Rights Day was realized thanks to the unconditional support of F. Hoffmann-La Roche LTD, Teva Europe, Boehringer Ingelheim International GmbH, and Viatris. The 2022 Edition of the European Patients' Rights Day was realized thanks to the unconditional support of Boehringer Ingelheim International GmbH, Illumina, MSD, Teva Europe, and Viatris.
How to Cite
Votta, M., Cardillo, M., & Papavero, M. (2022). 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". Advances in Health and Behavior, 5(1), 200-207.


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