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Archives for: May 7th, 2019

NORD Releases Principles for Assessing Proposals Designed to Lower the Cost of Prescription Drugs in the United States

Written by Lisa Sencen on May 7, 2019

Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.

People living with rare… Read More

Updated Study Analyzes Use and Cost of Orphan Drugs

Written by Laura Mullen on October 18, 2018

Washington, D.C., October 18, 2018— Despite a record-breaking number of new approvals, orphan drugs remain a nominal part of overall drug spending, accounting for only 9.6% of total sales in the U.S. in 2017, according to a new study released today by the IQVIA Institute. The study… Read More

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

Written by Laura Mullen on May 29, 2018

Washington, D.C., May 30, 2018—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… Read More

Together, we can be stronger for those that need us.

Written by Lisa Sencen on December 14, 2017
Dear Rare Disease Community Member,
Wow! What an exciting time to be involved with rare diseases. Never before has there been so much progress in diagnosing rare diseases and in the availability of new treatments! 2017 promises to be another record year in terms of new therapies becoming available for patients with rare… Read More