Wainstock Daniel, Katz Amiel
PUC-Rio, Rio de Janeiro, RJ, Brazil.
Harvard University, Cambridge, MA, USA.
Lancet Reg Health Am. 2023 Jan 27;18:100434. doi: 10.1016/j.lana.2023.100434. eCollection 2023 Feb.
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.
患有罕见病的人是社会中最弱势群体之一。他们在历史上一直被边缘化,并受到系统性的污名化。据估计,全球有3亿人患有罕见病。尽管如此,如今许多国家,尤其是拉丁美洲的国家,在公共政策和国家法律中仍未对罕见病给予关注。基于对拉丁美洲患者权益倡导组织的访谈,我们旨在就如何改善巴西、秘鲁和哥伦比亚这三个国家针对罕见病患者的公共政策和国家立法,为这三个国家的立法者和政策制定者提供建议。