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Zebras Among Us: Advocating for the 30 Million Americans Living with Rare Disease
被引:0
|作者:
Eric L. Wan
Yehuda Elkaim
William Gao
Robin Yoon
机构:
[1] Georgetown University School of Medicine,
[2] University of Pennsylvania Perelman School of Medicine,undefined
来源:
关键词:
Rare disease;
Advocacy;
Medical professionalism;
Medical education;
Health policy;
Innovation;
D O I:
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中图分类号:
学科分类号:
摘要:
Nearly 30 million (about 1 in 10) Americans have a rare disease. On average, rare disease patients wait 6 years for an accurate and definitive diagnosis and see as many as 12 specialists along their diagnostic journey. In this brief article, we highlight some of what is being done across patient care, medical education, policy, and innovation in order to improve the diagnostic and treatment journeys of rare disease patients. We hope that members of the medical education community will appreciate this call to action and engage in the rare disease space.
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页码:1239 / 1242
页数:3
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