There are 1,745 oncology associations of patients and caregivers registered in Italy in 2023 alone: 283 in Lombardy, 169 in Piedmont, 140 in Lazio, 137 in Emilia-Romagna, 129 in Veneto, 6 in Valle d’Aosta. On average one every 100 thousand inhabitants per single Region. These data give Italy the European ‘record’ in proportion to the number of inhabitants, at least among the main countries of the European Union. Suffice it to say that in France there are around 200 (20 national and 164 regional). It emerges from the first White Paper on the world of oncology volunteering, presented today in Rome. Promoted by Ropi (Italian Patients’ Oncology Network) – with the collaboration of the Regional Oncology Networks and the Italian oncology Irccs – the volume aims to survey but above all enhance the role that oncology associations of patients and caregivers play in the regional, social and collective fabric. The associations deal with issues such as the proposed law on the right to be forgotten oncology, the recognition of specific pathologies within the LEA (Essential Levels of Assistance). They dialogue with the institutions, participate in the technical tables and are alongside doctors and researchers: they collaborate in the development of information material, they act as guides with experience in the development of Pdta (Diagnostic Therapeutic Assistance Paths) for various neoplasms.
“The Associations listen, support the patient and contribute to filling some socio-welfare and information needs – explains the Minister of Health, Orazio Schillaci, who signs the preface of the volume -. They are precious allies who help to stimulate actions, social interventions -healthcare and legislative activity as in the case of the law on oncological oblivion. A human and social heritage whose support contributes to strengthening the assistance offered by the National Health System”. “This White Book – explains Stefania Gori, president of Ropi – is the first census of patient and caregiver associations in Italy. Ropi also intends to continue, in a shared manner, to outline the accreditation criteria of oncology associations in the various institutional working tables, continuing the path traced by Agenas, the National Agency for Regional Health Services”.
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