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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.

NIH/Office of Rare Disease Research


6701 Democracy Boulevard
Suite 1001, MSC 4874
Bethesda, MD 20892-7518





Email Address

[email protected]


The Office of Rare Disease Research was established in 1993 within the Office of the Director (OD), National Institutes of Health (NIH), to respond to the reporting requirements on the Orphan Drug Act; to implement the recommendations of the National Commission on Orphan Diseases; and to respond to requests for information on rare diseases. The Office of Rare Diseases develops and maintains a centralized database on rare disease clinical research supported by the NIH; stimulates rare disease research by supporting scientific workshops and symposia to identify such research opportunities; responds to requests for information on highly technical matters and matters of public policy relative to rare diseases and orphan products; provides information to the Office of the Director, NIH, on matters relating to rare diseases and orphan products; coordinates and serves as a liaison with Federal and non-Federal national and international organizations concerned with rare disease research and orphan products development; and prepares the NIH Director's annual report to Congress on rare disease and condition research activities sponsored by NIH. The Office of Rare Diseases also provides a web site on the Internet to help meet the need for up-to-date, accurate information frequently requested by patients and their family members or caregivers, health care providers, and research investigators. The site provides information on rare diseases and conditions; ongoing or planned research including clinical trials; and support services provided by voluntary health organizations. This site provides links to disease-specific information; to searchable databases that provide information on clinical studies; and to other government and non-government home pages and other voluntary health organizations that provide information and support services.

Please Note

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.