博文
罕见病国际研究信息资源
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罕见病，又称“孤儿病”，是指盛行率低、少见的疾病，但世界各国对于罕见疾病的定义不尽相同，世界卫生组织将罕见病定义为患病人数占总人口的0.65％～1％之间的疾病或病变。
http://baike.baidu.com/view/2631955.htm
国际研究信息资源：
http://rarediseases.info.nih.gov/Resources/Rare_Diseases_Information.aspx
Links to a broad range of information about rare diseases including definitions, causes, treatments, and publications about rare diseases. When you enter most of the Web sites listed below, you will leave the ORDR Web site. Please return to our Web site to find more information on rare diseases research and research resources, patient support groups, and genetic testing laboratories and clinics.
Rare Diseases and Related Terms
A searchable list of almost 7,000 rare diseases with links to information from federally supported databases and information sources.
NLM Gateway
Allows users to search across multiple resources offered on the National Library of Medicine's Web site.
PubMed
Access to more than 16 million MEDLINE citations, life science journals, and links to many sites providing full text articles.
Office of Orphan Products Development, FDA
Promotes the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions.
ORPHANET
European database dedicated to information on rare diseases and orphan drugs; it aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.
Talking Glossary of Genetics
The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help everyone understand the terms and concepts used in genetic research. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.
Federal Resources for Rare Diseases Information
A database of toll-free numbers from the National Library of Medicine (NLM) with descriptions of more than 14,000 biomedical information resources, including organizations, databases, research resources, etc.
The National Institutes of Health (NIH)
Information about the National Institutes of Health, the Nation's Medical Research Agency
Healthfinder.gov
A gateway to consumer health information maintained by the Federal government and its many partners.
USA.gov - Government Made Easy
As the U.S. government's official Web portal, USA.gov makes it easy for the public to get U.S. government information and services on the Web.
Talking Glossary of Genetics
The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help everyone understand the terms and concepts used in genetic research. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.
Other Resources for Rare Diseases Information
A clinic in Northeast Ohio that is a collaboration between the Amish and non-Amish communities to address the needs of all children for treatment, research, and education of rare genetic and metabolic disorders.
National Center for Education in Maternal and Child Health (NCEMCH)
Highlights documents and reports in the Maternal and Child Health Library that are related to the history of maternal and child health in the United States and health services for children and families.
National Dissemination Center for Children with Disabilities (NICHCY)
Education-focused information about disabilities and disability-related issues to benefit children and youth for families, educators, administrators, and the public.
The Rare Disease Community
The National Organization for Rare Disorders (NORD) andClinicaHealth provide a free online community service for rare-disease patients, their families, and caregivers.
Terms and Definitions
Technical terms and definitions from various glossaries.
Family Center on Technology and Disability
The Family Center on Technology and Disability is a resource designed to support organizations and programs that work with families of children and youth with disabilities.
ORPHANET
European database dedicated to information on rare diseases and orphan drugs; it aims to improve management and treatment of genetic, auto-immune or infectious rare diseases, rare cancers, or not yet classified rare diseases.
Swedish Rare Disease Database
The Swedish National Board of Health and Welfare publishes a database about rare diseases. The information is available in English.
https://m.sciencenet.cn/blog-280034-424474.html
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