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Advancing rare disease policy in Latin America: a call to action

People living with a rare disease are amongst the most vulnerable groups in society. They have been historically marginalised and systematically stigmatised. It is estimated that 300 million people worldwide live with a rare disease. Despite that, many countries today, especially in Latin America, s...

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Detalles Bibliográficos
Autores principales: Wainstock, Daniel, Katz, Amiel
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Elsevier 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9950655/
https://www.ncbi.nlm.nih.gov/pubmed/36844013
http://dx.doi.org/10.1016/j.lana.2023.100434
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author Wainstock, Daniel
Katz, Amiel
author_facet Wainstock, Daniel
Katz, Amiel
author_sort Wainstock, Daniel
collection PubMed
description People living with a rare disease are amongst the most vulnerable groups in society. They have been historically marginalised and systematically stigmatised. It is estimated that 300 million people worldwide live with a rare disease. Despite that, many countries today, especially in Latin America, still lack consideration of rare diseases in public policies and national laws. Based on interviews with patient advocacy groups in Latin America, we aim to provide recommendations for lawmakers and policymakers in Brazil, Peru, and Colombia on how to improve public policies and national legislation for persons living with rare diseases in these three countries.
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spelling pubmed-99506552023-02-25 Advancing rare disease policy in Latin America: a call to action Wainstock, Daniel Katz, Amiel Lancet Reg Health Am Health Policy People living with a rare disease are amongst the most vulnerable groups in society. They have been historically marginalised and systematically stigmatised. It is estimated that 300 million people worldwide live with a rare disease. Despite that, many countries today, especially in Latin America, still lack consideration of rare diseases in public policies and national laws. Based on interviews with patient advocacy groups in Latin America, we aim to provide recommendations for lawmakers and policymakers in Brazil, Peru, and Colombia on how to improve public policies and national legislation for persons living with rare diseases in these three countries. Elsevier 2023-01-27 /pmc/articles/PMC9950655/ /pubmed/36844013 http://dx.doi.org/10.1016/j.lana.2023.100434 Text en © 2023 The Author(s) https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
spellingShingle Health Policy
Wainstock, Daniel
Katz, Amiel
Advancing rare disease policy in Latin America: a call to action
title Advancing rare disease policy in Latin America: a call to action
title_full Advancing rare disease policy in Latin America: a call to action
title_fullStr Advancing rare disease policy in Latin America: a call to action
title_full_unstemmed Advancing rare disease policy in Latin America: a call to action
title_short Advancing rare disease policy in Latin America: a call to action
title_sort advancing rare disease policy in latin america: a call to action
topic Health Policy
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9950655/
https://www.ncbi.nlm.nih.gov/pubmed/36844013
http://dx.doi.org/10.1016/j.lana.2023.100434
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