Washington, DC, June 17, 2021—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD) regarding today’s US Supreme Court decision in California v. Texas:
“Today’s ruling is a triumph for all patients with a rare disorder and their loved ones,” said… Read More
Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According to Ray, climbing Everest was an amazing lesson about how hard it is to live without enough oxygen. While traveling… Read More
On September 26, BioNews Service published an extensive article written by reporter Larry Luxner, previewing the upcoming NORD Rare Diseases & Orphan Products Breakthrough Summit, which will be taking place October 21-22 in Washington, DC.
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The following story was submitted by Kirk Brazeau in honor of Rare Disease Day. In this story, Kirk shares his family’s journey of receiving a diagnosis for their son, Archer, of Recessive Dystrophic Epidermolysis Bullosa (RDEB). Read on for a harrowing account on hearing about a… Read More
Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call for video submissions on the patient advocacy experience. The videos will be the latest part of a year-long campaign marking… Read More
