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Archives for: August 14th, 2019

NORD Announces Four New Board Members

Written by Lisa Sencen on July 19, 2019

Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, announces the appointment of four new members to its Board of Directors, effective immediately.

Joining the Board of… Read More

Leveraging Real-World Treatment Experience from Expanded Access Protocols

Written by Lisa Sencen on November 19, 2018

Building on the Reagan-Udall Foundation for the FDA’s work with FDA and other stakeholders to develop the Expanded Access Navigator, the Reagan-Udall Foundation is convening stakeholders from government, industry, academia and patient groups to discuss process issues that include:

  • Increase understanding of the expanded access program
    • Identify and discuss strengths, challenges… 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