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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

National Library of Medicine


8600 Rockville Pike
00 Rockville Pike. Rockville, MD 20894





800 Number


Email Address

[email protected]


The National Library of Medicine (NLM), on the campus of the National Institutes of Health (NIH) in Bethesda, Maryland, is the world’s largest medical library. The Library collects materials in all areas of biomedicine and health care as well as works on biomedical aspects on technology, the humanities, and the physical, life, and social sciences. The Library’s collections currently contain approximately five million books, journals, technical reports, manuscripts, microfilms, photographs, and images. The NLM is a national resource for all U.S. health science libraries through a National Network of Libraries of Medicine. The Library is also engaged in a variety of additional programs and services and maintains a wide range of medical databases. The NLM’s National Center for Biotechnology Information, created by Congress in 1988, is engaged in storing and making accessible all data about the human genome resulting from genetic research at the NIH and laboratories around the nation. MEDLINE (MEDlars onLINE) is the NLM’s premier bibliographic database, containing more than nine million citations (e.g., authors, title, and journal reference) and author abstracts from over 3,800 biomedical journals published in the United States and approximately 70 countries. MEDLINE is now accessible free of charge to the public at the NLM's web site through "PubMed." The NLM’s search service also maintains links to participating online journals and other related databases. Health consumers are encouraged to discuss any search results with their health care providers. The National Library of Medicine’s web site is located at .

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The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.