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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...
Autores principales: | , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier
2023
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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. |
format | Online Article Text |
id | pubmed-9950655 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Elsevier |
record_format | MEDLINE/PubMed |
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 |
work_keys_str_mv | AT wainstockdaniel advancingrarediseasepolicyinlatinamericaacalltoaction AT katzamiel advancingrarediseasepolicyinlatinamericaacalltoaction |