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Archives for: June 17th, 2021

NORD Issues Statement on California v. Texas Ruling

Written by Valaree DonFrancesco on June 17, 2021

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 Reflections from 22,000 Feet

Written by Valaree DonFrancesco on June 11, 2021

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

Brazeau Family Story for Rare Disease Day

Written by Lisa Sencen on February 1, 2019

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

NORD Invites Video Submissions on Advocacy Experience

Written by Lisa Sencen on August 1, 2018

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