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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

Partnerships

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

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.

Learn more >

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Download the Rare Disease Fact sheet.

 

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

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

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

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

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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).