02784nas a2200313   4500000000100000008004100001260002400042653002700066100002600093700002000119700002100139700001700160700001300177700001500190700001700205700001400222700001400236700001200250700001700262700002000279700001500299700001500314700002700329245013900356856009200495490000800587520185000595022002502445       2022                            d  bFapUNIFESP (SciELO)10aMicrobiology (medical)1 ade Oliveira Junior WA1 aGómez i Prat J1 aAlbajar-Viñas P1 aCarrazzone C1 aKropf SP1 aDehousse A1 aCamargo AMDA1 aAnselmi M1 aBarba MCP1 aGuiu IC1 aBarros MDNDS1 aCavalvanti MDGM1 aCorreia CB1 aMartins SM1 aFINDECHAGAS Workgroup 00aHow people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day  uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC9281385/pdf/1678-8060-mioc-117-e220066.pdf0 v1173 a<p>It is well documented that Chagas disease (CD) can pose a public health problem to countries. As one of the World Health Organization Neglected Tropical Diseases undoubtedly calls for comprehensive healthcare, transcending a restricted biomedical approach. After more than a century since their discovery, in 1909, people affected by CD are still frequently marginalised and/or neglected. The aim of this article is to tell the story of their activism, highlighting key historical experiences and successful initiatives, from 1909 to 2019. The first association was created in 1987, in the city of Recife, Brazil. So far, thirty associations have been reported on five continents. They were created as independent non-profit civil society organisations and run democratically by affected people. Among the common associations' objectives, we notably find: increase the visibility of the affected; make their voice heard; build bridges between patients, health system professionals, public health officials, policy makers and the academic and scientific communities. The International Federation of Associations of People Affected by CD - FINDECHAGAS, created in 2010 with the input of the Americas, Europe and the Western Pacific, counts as one of the main responses to the globalisation of CD. Despite all the obstacles and difficulties encountered, the Federation has thrived, grown, and matured. As a result of this mobilisation along with the support of many national and international partners, in May 2019 the 72nd World Health Assembly decided to establish World Chagas Disease Day, on 14 April. The associative movement has increased the understanding of the challenges related to the disease and breaks the silence around Chagas disease, improving surveillance, and sustaining engagement towards the United Nations 2030 agenda.</p>
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