Alone We Are Rare, Together We Are Strong: A Review of the National Organization for Rare Disorders (NORD®)

IF 0.4 Q4 PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH Journal of Consumer Health on the Internet Pub Date : 2022-10-02 DOI:10.1080/15398285.2022.2139492

Kat Phillips

引用次数: 0

Abstract

Abstract The National Organization for Rare Disorders, or NORD®, is a robust resource suitable for patients, families, clinicians, researchers, and advocates of those living with or impacted by rare diseases. Given that rare diseases affect around 30 million people in the United States, half of which are estimated to be children, it is vital to have access to credible and accessible information. An added bonus of NORD is their staunch advocacy platform, which brings to light other consumer health information which may otherwise be hard to find. This consumer health resource review covers the consumer-focused aspects of NORD.

查看原文

微信好友朋友圈 QQ好友复制链接

本刊更多论文

独自我们罕见，团结我们强大：国家罕见疾病组织（NORD®）综述

摘要国家罕见病组织（NORD®）是一个强大的资源，适合患者、家庭、临床医生、研究人员和罕见病患者或受罕见病影响者的倡导者。鉴于罕见病影响着美国约3000万人，其中一半估计是儿童，获得可信和可获取的信息至关重要。NORD的一个额外好处是他们坚定的宣传平台，它揭示了其他可能很难找到的消费者健康信息。本消费者健康资源审查涵盖了NORD以消费者为中心的方面。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

求助全文

约1分钟内获得全文去求助

来源期刊

Journal of Consumer Health on the Internet PUBLIC, ENVIRONMENTAL & OCCUPATIONAL HEALTH-

CiteScore

1.30

自引率

12.50%

发文量

期刊介绍： The Journal of Consumer Health on the Internet is the only professional peer-reviewed journal devoted to locating consumer health information via the Internet. In this journal librarians and health information providers describe programs and services aimed at helping patients and the general public find the health information they need. From the Editor: "Studies have shown that health information is one of the major reasons that people worldwide access the Internet. As the amount of health information on the Web increases exponentially, it becomes critical that librarians-including public and medical librarians-be knowledgeable about what is available online and be able to direct users to reliable, accurate, quality information."