Written by Christina Jensen on January 17, 2019
Washington, DC, January 17, 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 two additions to its management team, effective immediately.
Rachel Sher joins NORD as Vice President of Regulatory and Government Affairs,… Read More
Written by Christina Jensen 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
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
Written by Laura Mullen on October 3, 2018
Washington, D.C., October 3, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today is celebrating five years of patient registry success with the announcement of a new multi-stakeholder model of engagement in collaboration with the Foundation for Prader-Willi… Read More
Written by Laura Mullen on September 11, 2018
Washington, D.C., September 11, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced the addition of ten new rare disease registries, made possible through a multi-year grant award from Shire.
NORD’s IAMRARETM Registry Program provides a web-based tool… Read More
