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Archives for: December 13th, 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

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

New Research Funding Opportunities Available from NORD

Written by Laura Mullen on May 24, 2018

All U.S. and international researchers are encouraged to apply by the initial application deadline of July 16, 2018

 

Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the… Read More

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Written by Christina Jensen on July 25, 2017

Washington, D.C., July 25, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.

As the primary… Read More