医学生在倡导罕见病方面的作用——来自低收入和中等收入国家的经验

Rare Pub Date : 2023-01-01 DOI:10.1016/j.rare.2023.100004
Javeria Bilal Qamar , Muhammad Uzair , Shahnoor Ahmed , Hamna Ganny , Lena Jafri , Salman Kirmani
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引用次数: 0

摘要

2023年是斑马年,是庆祝罕见疾病患者希望的一年。虽然每一种罕见疾病影响的人很少,但全世界患有罕见疾病的人总共超过3亿人。一年一度的罕见病日庆祝活动使社区能够倡导为那些病情不太为人所知的人提供能见度、包容性和更好的医疗保健。在巴基斯坦这样的发展中国家,高质量的医疗保健本身就是一种稀缺商品,患有罕见疾病并生活在这样的国家,使患有罕见疾病的人容易面临许多挑战。有鉴于此,从患者历程中学习和倡导罕见病是朝着改善护理的正确方向迈出的一步。在这篇简短的文章中,我们分享了巴基斯坦医学生作为利益攸关方在治疗罕见病方面带头努力的经验。我们还讨论了作为医学教育框架一部分的健康宣传教学的重要性,这有助于培养医学生的同情心,我们希望他们在未来成为更好护理的领导者。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
The role of medical students in advocacy for rare diseases – Experience from a Low- and Middle-Income Country (LMIC)

2023 marks the Year of the Zebra, a year to celebrate hope for those with rare diseases. While each individual rare disease affects few, collectively everyone living with a rare disease makes up a total of over 300 million people worldwide. The annual celebration of rare disease day allows communities to advocate for visibility, inclusion and better healthcare for those with lesser well known conditions. Having a rare disease and living in a developing country like Pakistan, where quality healthcare is itself a rare commodity, predisposes those with rare diseases to many challenges. In this light, learning from patient journeys and advocating for rare diseases is a step in the right direction to better care. In this short communication, we share experiences from Pakistan of medical students spearheading one such effort as stakeholders in the care for rare. We also discuss the importance of teaching health advocacy as part of the medical education framework, helping nurture empathy in medical students, who we hope to be leaders of better care in the future.

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