Published December 14, 2021 by NORD
Rare Disease Day is a day of awareness for the over 7,000 rare diseases that impact over 300 million people globally! As the US sponsor for Rare Disease Day, NORD is leading the call to light up …
Continue reading “How to Light Up for Rare – Rare Disease Day 2022”
Read morePublished November 19, 2021 by NORD
Washington, DC, November 19, 2021— Today, the House of Representatives passed H.R. 5376, the Build Back Better Act. In response, the National Organization for Rare Disorders (NORD), which represents the 25-30 …
Continue reading “NORD’s Response to the House Passage of the Build Back Better Act”
Read morePublished November 18, 2021 by NORD
As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at …
Read morePublished November 1, 2021 by NORD
Letter to Governors Stresses Urgency of Expiring Licensure Waivers and its Impact on Patient Access to Care Washington, DC – November 1, 2021 – Today, more than 230 organizations sent …
Read morePublished October 29, 2021 by NORD
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft …
Continue reading “NORD Response to New Draft of the Build Back Better Act”
Read morePublished September 17, 2021 by NORD
Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were …
Continue reading “A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story”
Read morePublished September 13, 2021 by NORD
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the more than 25 million Americans with rare diseases, issued the following statement in response to upcoming …
Continue reading “NORD Statement on Proposed Changes to the Orphan Drug Tax Credit”
Read morePublished September 1, 2021 by NORD
Every September, we celebrate and raise awareness for newborn screening (NBS) in the United States and the impact it has had on millions of families. Each year, approximately four million babies are screened for …
Continue reading “Newborn Screening: History, Future and Awareness Month”
Read morePublished June 17, 2021 by NORD
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 …
Continue reading “NORD Issues Statement on California v. Texas Ruling”
Read morePublished June 11, 2021 by NORD
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 …
Continue reading “Ray Stevens’ Rare Disease Reflections from 22,000 Feet”
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