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首页> 外文期刊>Nature clinical practice. Rheumatology >Advocacy for persons with rare diseases: a strategy for creating influence.
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Advocacy for persons with rare diseases: a strategy for creating influence.

机译：对罕见病患者的宣传：创造影响力的策略。

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摘要

Approximately 7,000 rare diseases-operationally defined in the US as disorders that affect 200,000 people or fewer-exist (NORD Guide to Rare Disorders. Lippincott Williams & Wilkins, Philadelphia, 2003). Of these disorders, more than 100 are rheumatic diseases (Decker JL [1983] Arthritis Rheum 26:1029-1032). Over 800 organizations for rare disorders exist. Rare diseases share many features. They are not covered well in medical school curricula. Most primary care physicians lack sufficient experience to prescribe and coordinate the diverse services needed over a patient's lifetime. Furthermore, most of these diseases are considered to appeal to 'small markets' and are neglected for research and development by the pharmaceutical and medical device industries.
机译：在美国，约有7,000种罕见疾病被手术定义为影响200,000人或更少的疾病（NORD罕见疾病指南。LippincottWilliams＆Wilkins，费城，2003年）。在这些疾病中，超过100种是风湿性疾病（Decker JL [1983] Arthritis Rheum 26：1029-1032）。现有800多个罕见疾病的组织。罕见疾病具有许多特征。医学院的课程没有对它们进行很好的介绍。大多数初级保健医生缺乏足够的经验来开处方和协调患者一生中所需的各种服务。此外，这些疾病中的大多数被认为吸引了“小市场”，而制药和医疗器械行业却忽略了其研发工作。

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