Background:

Hemophilia is a rare and complex inherited bleeding disorder in which people may experience prolonged, painful, and debilitating bleeds due to an inability of their blood to clot properly. Although there has been great progress in the management of the disease over the past 50+ years, many important scientific questions have gone unanswered. Further, despite decades-long interest and desire by medical providers and scientists, the U.S. government and the hemophilia community to conduct comprehensive genetic testing to better understand the disorder, challenges such as cost, access, and privacy concerns served as ongoing obstacles.

Focus of the Article:

To overcome these challenges and address this unmet need, four community organizations and a health communications and social marketing agency came together in 2011 to create a first-of-its kind public–private partnership (PPP) called My Life, Our Future (MLOF) to provide people with hemophilia information about their disorder while also furthering scientific understanding.

Importance to the Social Marketing Field:

This article will explain how MLOF utilized social marketing to drive broad community engagement, ultimately genotyping more than one third of the U.S. male hemophilia population through the program and opening the MLOF Research Repository, the largest research repository of its kind. It will also discuss the key learnings gleaned through the establishment and implementation of this program, notably the strength of a PPP in health care.

中文翻译：

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遗传知识：公私合作推动罕见病社区的进步

背景：

血友病是一种罕见且复杂的遗传性出血病，由于血液无法正常凝结，人们可能会经历长时间，痛苦和使人衰弱的出血。尽管在过去50多年的时间里，该病的管理取得了长足的进步，但许多重要的科学问题仍未得到解答。此外，尽管医疗服务提供者和科学家数十年来一直怀着浓厚的兴趣和愿望，但美国政府和血友病社区进行全面的基因检测以更好地了解这种疾病，但诸如成本，获取途径和隐私问题等挑战仍是持续的障碍。

文章重点：

为了克服这些挑战并满足这一未满足的需求，2011年，四个社区组织与一个健康传播和社会营销机构共同成立了首个公私合作伙伴关系（PPP），称为我的生活，我们的未来（MLOF）在为人们提供有关其疾病的血友病信息的同时，进一步促进科学理解。

对社会营销领域的重要性：

本文将说明MLOF如何利用社会营销来推动广泛的社区参与，最终通过该计划对美国三分之一以上的男性血友病人群进行基因分型，并开放MLOF研究库，这是同类最大的研究库。它还将讨论通过该计划的建立和实施而获得的主要学习成果，特别是PPP在医疗保健方面的优势。