Wilson Alves de Oliveira Junior, Jordi Gómez i Prat, Pedro Albajar-Viñas, Cristina Carrazzone, Simone Petraglia Kropf, Aurore Dehousse, Ana Maria de Arruda Camargo, Mariella Anselmi, Maria Cristina Parada Barba, Isabel Claveria Guiu, Maria das Neves Dantas Silveira Barros, Maria da Glória Melo Cavalvanti, Cassandra Barros Correia, Silvia Marinho Martins, null FINDECHAGAS Workgroup, Institut Català de la Salut, [de Oliveira Junior WA, Carrazzone C] Universidade de Pernambuco, Ambulatório de Referência Estadual em Doença de Chagas, Casa de Chagas, Recife, Brasil. Associação Pernambucana de Portadores de Doença de Chagas, Recife, Brasil. International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, Brasil. [Gómez Prat J] International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, Brasil. Programa de Salut Internacional del Institut Català de la Salut Equip de Salut Pública i Comunitària, Barcelona, Spain. Unitat de Salut Internacional, Drassanes - Vall d’Hebron Hospital Universitari, Barcelona, Spain. Asociación de Amigos de las Personas con la Enfermedad de Chagas, Barcelona, Catalonia, Spain. [Albajar-Viñas P] International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, Brasil. World Health Organization, Department of Control of Neglected Tropical Diseases, Geneva, Switzerland. [Petraglia Kropf S] Fundação Oswaldo Cruz-Fiocruz, Casa de Oswaldo Cruz, Departamento de Pesquisa em História das Ciências e da Saúde, Rio de Janeiro, Brasil. [Dehousse A] World Health Organization, Department of Control of Neglected Tropical Diseases, Geneva, Switzerland. [Claveria Guiu I] Programa de Salut Internacional del Institut Català de la Salut, Equip de Salut Pública i Comunitària, Barcelona, Spain. Unitat de Salut Internacional, Drassanes - Vall d’Hebron Hospital Universitari, Barcelona, Spain. Asociación de Amigos de las Personas con la Enfermedad de Chagas, Barcelona, Catalonia, Spain, and Vall d'Hebron Barcelona Hospital Campus
Chagas disease; Negligence; Associative movement Enfermedad de Chagas; Negligencia; Movimiento asociativo Malaltia de Chagas; Negligència; Moviment associatiu 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.