Review of Rare Diseases Resources: National Organization for Rare Disorders (NORD) Rare Disease Database,NIH Genetic and Rare Diseases Information Center,and Orphanet |
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Authors: | Kay Hogan Smith |
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Affiliation: | UAB Libraries - Lister Hill Library of the Health Sciences, University of Alabama at Birmingham, Birmingham, Alabama, USA |
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Abstract: | This column profiles three important online resources for rare disorder information. The National Organization for Rare Disorders (NORD) Rare Disease Database set the standard for thorough, detailed monographs on rare diseases starting in the 1990s. The NORD Database is complemented by the National Institutes of Health (NIH) Genetic and Rare Diseases Information Center online and the European resource, Orphanet, both of which provide much broader coverage, if less in depth than NORD’s. Reading level for all three information sources is high, and there are occasional issues with currency. However, consumer health librarians should find these organizations’ web-based databases to be reliable sources of information on health conditions that can be perplexing for both patient and health care providers alike. |
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Keywords: | National Organization for Rare Disorders (NORD) Rare Disease Database NIH Genetic and Rare Diseases Information Center (GARD) orphan drugs Orphanet rare diseases |
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