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）是由美国国立卫生研究院（NIH）的两个机构——国家人类基因组研究所（NHGRI）和罕见疾病研究办公室（ORDR）于2002年创建的，目的是帮助人们找到有关遗传和罕见疾病的有用信息。GARD为经验丰富的信息专家提供即时的、几乎24小时不间断的访问，这些专家可以用英语和西班牙语提供有关遗传和罕见疾病的最新和准确的信息。迄今为止，GARD已答复了15500多个关于罕见病和遗传病的询问。请求不仅来自病人及其家属，也来自医生、护士和其他保健专业人员。GARD也被证明对遗传咨询师、职业和物理治疗师、社会工作者以及与遗传或罕见疾病患者打交道的教师很有用。即使是研究遗传疾病或罕见疾病的科学家，以及正在参加临床研究的人，也会联系GARD。希望帮助人们为遗传病或罕见病患者寻找资源的社区领导人以及希望其成员获得最新疾病信息的倡导团体已经联系了GARD。正在撰写遗传病或罕见病报道的媒体成员发现，GARD手头的信息有用、准确和完整。

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.