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Archives for: December 18th, 2018

Year-End Message from NORD’s President and CEO

Written by Christina Jensen on December 13, 2018

For more than 35 years, NORD has been the voice of the rare disease community. Whether it’s advocating in Washington, protecting the Orphan Drug Act, working with the FDA to integrate the patient’s voice or providing assistance to those in need, NORD is the organization the rare disease community and… Read More

Orphan Drug Act Resolution Introduced in Congress

Written by Christina Jensen on November 19, 2018

Senator Hatch and Representatives Lance and Butterfield introduced a resolution that heralds the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.

This year marks the 35th anniversary for the ODA. That means 35 years of increased hope and treatments for the rare disease community…. 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 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More