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NORD and the Orphan Drug Act Celebrate 35 Years Driving Rare Disease Advocacy, Research, and Innovation

June 1, 2018
The National Organization for Rare Disorders (NORD) has been instrumental in influencing public policy, regulatory frameworks, research, and economic discussions around rare diseases and orphan drugs. Now celebrating its 35th anniversary, NORD continues to lead the fight for rare diseases by providing direct support to patients and organizations, accelerating research, providing education, disseminating information, raising public awareness, and driving public policy.

One of NORD's greatest legacies is the passage of the Orphan Drug Act (ODA) in 1983 - the first and most influential piece of legislation for rare diseases, not just in the U.S. but globally. With the Orphan Drug Act also celebrating its 35th anniversary, it is an appropriate time to remind ourselves of the Act’s original intent as well as the benefits and value it has brought to not only rare diseases but the health care community at large.

To that end, NORD has released an infographic from RareInsights, its new initiative to further educate stakeholders on the realities of rare diseases and orphan drugs, entitled 5 Myths About Orphan Drugs and the Orphan Drug Act. In 2017, NORD commissioned a QuintilesIMS (now IQVIA) study on the cost and use of orphan drugs, which provided groundbreaking data and clarification on the impact of orphan designated drugs on overall healthcare spending. The 5 Myths are based on the findings from that study. For more information on this study and other NORD initiatives visit www.rarediseases.org.

Peter L. Saltonstall, President and CEO, National Organization for Rare Disorders (NORD)