NORD Launches RareInsights - New Initiative to Support Data-Driven Advocacy, and Presents "5 Myths About Orphan Drugs and the Orphan Drug Act"

WASHINGTON, May 30, 2018 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5 Myths About Orphan Drugs and the Orphan Drug Act.

"At NORD, we believe that it is critical for next generation advocacy to include empirical data in order to affect change," said Pamela Gavin, Chief Strategy Officer for NORD. "RareInsights is the program through which NORD will release data-driven insights that support rare disease advocacy priorities. It will feature presentations of data-based information in a variety of accessible formats, including white papers, infographics, fact sheets, and more."

The first offering from RareInsights, 5 Myths About Orphan Drugs and the Orphan Drug Act, is an infographic that addresses some of the most common misperceptions as identified in a recent study commissioned by NORD and published by the QuintilesIMS Institute (now IVQIA). The study analyzed the role of the Orphan Drug Act and orphan drug usage and costs in the context of public policy and health care financing issues in the rare disease community.

The 5 Myths touch on hot button topics including the limited way that orphan drug costs contribute to overall health care costs, distinguishing between specialty vs orphan drugs, and the benefits of the Orphan Drug Act.

According to NORD President and CEO Peter L. Saltonstall, there are many misconceptions about orphan drug costs and about the benefits of the Orphan Drug Act.  "The QuintilesIMS study provided data reinforcing the basic value of the Orphan Drug Act and quantifying orphan drug spending within the broader context of total drug sales. Simply put, orphan drug spending is not as substantial as has been reported. As NORD marks its 35^th anniversary and the 35^th year of the Orphan Drug Act, we look forward to continuing to provide the voice of the rare disease patient community and playing a vital role in these discussions," he said.

About 7,000 rare diseases have been identified, affecting 25 to 30 million Americans. Of the 7,000 that exist, fewer than 500 rare diseases have FDA-approved treatments. Many affect only a few hundred or a few thousand individuals. Rare diseases tend to be chronic, serious and life-threatening.  More than 80% are believed to be genetic. The Orphan Drug Act is a catalyst for incentivizing interest in developing treatments for rare diseases and is critical for continuing to close the gap for the 95% of patients who are still without any approved treatment options.

About the National Organization for Rare Disorders (NORD)®

The National Organization for Rare Disorders (NORD)^® is the leading independent advocacy organization representing all patients and families affected by rare diseases.  NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people.  NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most.  NORD represents more than 270 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.

SOURCE National Organization for Rare Disorders (NORD)

Related Links

http://www.rarediseases.org