THE GENETIC AND RARE DISEASES INFORMATION CENTER AND ITS CLOSELY INTER-RELATED RESEARCH SUPPORT ACTIVITIES. POP: 07/29/2019 TO 07/28/2021. MOD P00004

遗传和罕见疾病信息中心 (GARD) 由国家人类基因组研究所 (NHGRI) 和罕见疾病研究办公室 (ORDR)（美国国立卫生研究院 (NIH) 的两个机构）于 2002 年创建，旨在帮助人们找到有关遗传和罕见疾病的有用信息。 GARD 提供即时、几乎全天候的联系经验丰富的信息专家，他们可以提供有关遗传和罕见疾病的最新准确信息（英语和西班牙语）。到目前为止，GARD 已回复了超过 15,500 个有关罕见病和遗传病的询问。请求不仅来自患者及其家人，还来自医生、护士和其他医疗保健专业人员。事实证明，GARD 对于遗传咨询师、职业和物理治疗师、社会工作者以及与遗传病或罕见病患者一起工作的教师也很有用。即使是正在研究遗传或罕见疾病并需要研究信息的科学家以及参与临床研究的人员也已联系 GARD。希望帮助人们为遗传病或罕见病患者找到资源的社区领袖以及希望为其成员提供最新疾病信息的倡导团体已联系 GARD。撰写有关遗传或罕见疾病报道的媒体成员发现 GARD 现有的信息有用、准确且完整。

The Genetic and Rare Diseases Information Center (GARD) was created in 2002 by the National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases Research (ORDR) - two agencies at the National Institutes of Health (NIH) - to help people find useful information about genetic and rare diseases. GARD provides immediate, virtually round-the-clock access to experienced information specialists who can furnish current and accurate information - in both English and Spanish - about genetic and rare diseases. So far, GARD has responded to over 15,500 inquiries on rare and genetic diseases. Requests come not only from patients and their families, but also from physicians, nurses and other health-care professionals. GARD also has proved useful to genetic counselors, occupational and physical therapists, social workers, and teachers who work with people with a genetic or rare disease. Even scientists who are studying a genetic or rare disease and who need information for their research have contacted GARD, as have people who are taking part in a clinical study. Community leaders looking to help people find resources for those with genetic or rare diseases and advocacy groups who want up-to-date disease information for their members have contacted GARD. And members of the media who are writing stories about genetic or rare diseases have found the information GARD has on hand useful, accurate and complete.