To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


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.

Indian Organization for Rare Diseases


699 Apache Lane
St. Paul, Minnesota 55120 USA


"The Indian organization for rare diseases", for short I-ORD was conceived in 2005 and is incorporated as a not-for-profit organization in India as well as in USA with the help of friends, colleagues, relatives and many who believe that “it is the right thing to do” for Indian rare diseases community.  It is the umbrella organization and represents interests of all rare diseases, individual patients, patient support groups, health policy advocates and health care provides for rare disease. India does not have definition for rare diseases.  Multiple languages, multiple cultures and host of other factors contribute to ineffective communication.  Sixty percent of Indian people live in rural areas with poverty and un-education.  Government of India has no public policy, no needed number of trained doctors or diagnostic labs etc.  There are no incentives to Indian pharma industry to develop orphan drugs.  It is hard to find the information on rare diseases either for families or professionals.  There is no awareness of rare diseases throughout the society and problems are compounded by un-education and poverty.  Rare diseases are treated as social stigma by the society and invariably the burden falls on the mother more than father.  The families affected by rare disease are isolated in their communities with little or no access to disease specific information.  I can go on and on.  Many issues that prompted us to take action and led to the formation of I-ORD.

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.