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**IMPORTANT**
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.
ORPHANET
a/k/a: ORPHANET
Address
Inserm US 14
Rare Disease Platform
Paris, 75014
France
Phone
331-565-38137
Fax
331-565-38138
800 Number
--
TDD
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Email Address
orphanet@orpha.net
Website
The ORPHANET is a database dedicated to providing information on rare diseases and orphan drugs. Its access is free of charge. It includes an encyclopedia of rare diseases covering more than 1,300 diseases which is expert-authored and peer-reviewed, and a directory of services in Europe, including information on specialized clinics, clinical laboratories, ongoing research projects, clinical trials, registries, and support groups. ORPHANET also offers to patients the possibility to register to be informed about new clinical research projects or to be put in contact with another patient or family experiencing the same disease. ORPHANET has established a sister web site at www.orphanxchange.org to allow researchers to post their projects that may be of interest to industry. This is a tool to facilitate partnerships in the area of device and drug development.
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 that credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions are strictly prohibited.
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NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.
