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Patient-Centered, Data-Driven Advocacy

NORD_RareInsights_Logo_FNLRareInsights™ is a NORD initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families.

Through this initiative, NORD is commissioning and undertaking a broad range of projects to collect and analyze empirical data for next-generation advocacy that is patient-centered and data-driven. Information is shared with the community in a variety of accessible formats, including reports, white papers, infographics, fact sheets, and more.

Patient-Centered, Data-Driven Advocacy


If you or your organization are interested in partnering with NORD on a RareInsights study or publication, please contact us at

Latest Release

Today, there are many misconceptions about orphan drugs and about the Orphan Drug Act.  In 2017, NORD commissioned a study by QuintilesIMS (now IQVIA) to quantify the true impact of orphan drugs on overall healthcare and prescription drug spending. This study found that orphan drugs only accounted for 7.9% of total drug sales.

NORD created the 5 Myths About Orphan Drugs and the Orphan Drug Act series to help dispel some of these myths and to educate stakeholders.

Download the NORD 5 Myths About Orphan Drugs flyer.

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Download the Rare Disease Fact sheet.



Download the 5 Myths About the Orphan Drug Act and Orphan Drugs infographic.


Download Trends in Orphan Drug Costs and Expenditures Do Not Support Revisions in the Orphan Drug Act: Background and History. (2017)


Download Orphan Drugs in the United States: Providing Context for Use and Cost. (2017)


Download Impact of Orphan Drug Tax Credit on Treatments for Rare Diseases. Published by NORD and BIO (2015).


Download Quantum of Effectiveness Evidence in FDA’s Approval of Orphan Drugs: Cataloguing FDA’s Flexibility in Regulating Therapies for Persons with Rare Disorders. Published by Frank J. Sasinowski, M.S., M.P.H., J.D., former Chairman of the Board for NORD (2011).