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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 Organization for Rare Disorders, Inc.


55 Kenosia Ave.
Danbury, CT 06813-1968





800 Number




Email Address

[email protected]


The National Organization for Rare Disorders (NORD) is a non-profit federation of voluntary health organizations dedicated to helping people with rare orphan diseases and assisting the organizations that serve them. Established in 1983, NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Through its Rare Disease Database, NORD provides reports in understandable, layperson's terminology on more than 1,200 rare disorders. Through its Organizational Database, it provides referrals to more than 2,000 nonprofit organizations and government agencies that help patients and families affected by rare diseases. In addition to patient education, NORD provides educational materials for medical professionals, including a series of free booklets for physicians. It administers medication assistance programs and research grants and fellowships, and it provides advocacy on legislative matters of interest to the rare disease community. NORD is the national sponsor in the U.S. for Global Rare Disease Day, which is observed around the world every year on the last day of February.

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.