Parsipanny, NJ – Frontline Medical Communications (FMC) and the National Organization for Rare Disorders (NORD)® this week announced the release of the 6th annual Rare Neurological Disease Special Report. As the largest Rare Neurological Disease Special Report published to-date, this year’s issue features a unifying theme of the… Read More
As information on the coronavirus, which causes COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC). The National Organization for Rare Disorders (NORD) continues to monitor the situation with the rare community in mind. The severity of illness or… Read More
Washington, DC, February 28, 2020—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing over 25 million Americans with rare diseases, today launched the Undiagnosed Rare Disease Registry, a new study to collect de-identified information about hard-to-solve medical cases that will enable researchers to perform analyses at… Read More
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An essay by NORD President and CEO Peter L. Saltonstall on the Orphan Drug Act is featured in Congressional Quarterly Researcher’s Conquering Rare Diseases special issue.
“Rare disease patients cannot afford to return to the early 1980s. The more than 25 million rare disease patients in the United States are counting… Read More
Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™), while many US states took powerful steps forward in 2019, there is major work yet to be done… Read More
