Written by Laura Mullen on February 11, 2020
Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations and industry innovators will be honored for their outstanding work for the rare disease community on May 15, 2020, in… Read More
Written by Laura Mullen on February 3, 2020
#NORDinthenews
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
Written by Laura Mullen on January 23, 2020
Washington, DC, January 23, 2020–The National Organization for Rare Disorders (NORD)®, the Foundation for Rare Blood Diseases (SZB) and the pyruvate kinase deficiency community together made history on September 20, 2019 with patients and families sharing their experiences directly with the US Food and Drug Administration (FDA) and other key… Read More
Written by Laura Mullen on January 20, 2020
At NORD we are extremely proud to welcome our 300th member organization! Our Odyssey is a national nonprofit supporting chronic and rare disease young adult patients by providing social and emotional support in the hope of improving their quality… Read More
Written by Laura Mullen on December 3, 2019
By Debbie Drell, Director of Membership
My sister was diagnosed with a rare disease, pulmonary hypertension, in September of 1998. At some point during her diagnosis, she was told she wouldn’t live to see her 30th birthday. She was 28. There was one… Read More
