What Is the NORD® Rare Disease Database?
The NORD Rare Disease Database is an inclusive and comprehensive list of rare diseases based on information from established rare disease ontologies and it is an ongoing project made possible by a close collaboration with MONDO, Orphanet, and Online Mendelian Inheritance in Man (OMIM). The NORD Rare Disease Database includes:
NORD Rare Disease Reports: These reports provide detailed information about symptoms, causes, diagnosis, treatments, clinical trials, and support resources, including patient advocacy organizations. Each report includes references from textbooks, articles, websites, and government agencies.
Rare diseases that do not have a NORD Rare Disease Report have information from well–respected sources. Some of these additional resources have technical language, so you may want to talk to your healthcare provider about it.
NORD also provides many reports in Spanish, and additional translations can be requested by contacting us at [email protected].
What is a Rare Disease
A rare disease is a disease, disorder, illness or condition that affects fewer than 200,000 Americans. There are over 10,000 rare diseases that together affect more than 30 million Americans. NORD is dedicated to the identification, treatment, and cure of these diseases through comprehensive education, advocacy, research, and service programs.
Downloading a Subset of NORD’s Rare Disease Database
Access to a limited subset of the database is available for non-commercial educational and research purposes. Before downloading, please review our Terms of Use to understand permitted usage. If you meet the criteria, you can request access by completing the data download form.
Need more help?
If you cannot find the information you need, our Information and Resource Services team is always available to help, and our team can be reached by phone at (800) 469-0283 or email: [email protected].