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.
4301 Connecticut Avenue NW
Washington, DC 20008-2369 USA
The Genetic Alliance is an international coalition comprised of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests. As a broad-based coalition of key stakeholders, it leverages the voices of millions of individuals living with genetic conditions. The board and staff of Genetic Alliance empower individuals and families affected by genetic conditions by promoting public participation in informed dialogue; access to quality resources essential for informed choices; leadership development within advocacy communities; involvement of consumers in public policy and healthcare discussions; and collaboration with diverse, underserved and underrepresented communities.
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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.