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
Written by Valaree DonFrancesco 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
Written by Jennifer Huron on October 17, 2017
Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S.
Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National… Read More
Written by Jennifer Huron on February 24, 2017
Washington, D.C.—February 24, 2017—The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, has awarded seven new research grants to fund rare disease research.
Research grants awarded for 2016 Requests for Proposals include:
For the study of Alveolar Capillary… Read More