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How people affected by Chagas disease have struggled with their negligence: history, associative movement and World Chagas Disease Day.
de Oliveira Junior, Wilson Alves; Gómez I Prat, Jordi; Albajar-Viñas, Pedro; Carrazzone, Cristina; Kropf, Simone Petraglia; Dehousse, Aurore; Camargo, Ana Maria de Arruda; Anselmi, Mariella; Barba, Maria Cristina Parada; Guiu, Isabel Claveria; Barros, Maria das Neves Dantas Silveira; Cavalvanti, Maria da Glória Melo; Correia, Cassandra Barros; Martins, Silvia Marinho.
Afiliação
  • de Oliveira Junior WA; Universidade de Pernambuco, Ambulatório de Referência Estadual em Doença de Chagas, Casa de Chagas, Recife, PE, Brasil.
  • Gómez I Prat J; Associação Pernambucana de Portadores de Doença de Chagas, Recife, PE, Brasil.
  • Albajar-Viñas P; International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, SP, Brasil.
  • Carrazzone C; International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, SP, Brasil.
  • Kropf SP; Unitat de Salut Internacional Vall d'Hebron-Drassanes, Programa de Salut Internacional del Institut Català de la Salut Equip de Salut Pública i Comunitària, Barcelona, Catalonia, Spain.
  • Dehousse A; Asociación de Amigos de las Personas con la Enfermedad de Chagas, Barcelona, Catalonia, Spain.
  • Camargo AMA; International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, SP, Brasil.
  • Anselmi M; World Health Organization, Department of Control of Neglected Tropical Diseases, Geneva, Switzerland.
  • Barba MCP; Universidade de Pernambuco, Ambulatório de Referência Estadual em Doença de Chagas, Casa de Chagas, Recife, PE, Brasil.
  • Guiu IC; Associação Pernambucana de Portadores de Doença de Chagas, Recife, PE, Brasil.
  • Barros MDNDS; International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, SP, Brasil.
  • Cavalvanti MDGM; Fundação Oswaldo Cruz-Fiocruz, Casa de Oswaldo Cruz, Departamento de Pesquisa em História das Ciências e da Saúde, Rio de Janeiro, RJ, Brasil.
  • Correia CB; World Health Organization, Department of Control of Neglected Tropical Diseases, Geneva, Switzerland.
  • Martins SM; International Federation of Associations of People Affected by Chagas, FINDECHAGAS Advisory Board, Campinas, SP, Brasil.
Mem Inst Oswaldo Cruz ; 117: e220066, 2022.
Article em En | MEDLINE | ID: mdl-35858002
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.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Saúde Global / Doença de Chagas Tipo de estudo: Risk_factors_studies Limite: Humans Idioma: En Revista: Mem Inst Oswaldo Cruz Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Brasil País de publicação: Brasil
Texto completo
Adicionar na Minha BVS
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Saúde Global / Doença de Chagas Tipo de estudo: Risk_factors_studies Limite: Humans Idioma: En Revista: Mem Inst Oswaldo Cruz Ano de publicação: 2022 Tipo de documento: Article País de afiliação: Brasil País de publicação: Brasil