Published February 15, 2022 by NORD
Rare disease community eager to continue important partnership with FDA February 15, Washington, DC – Today, the National Organization for Rare Disorders (NORD) President and CEO Peter Saltonstall issued the …
Read morePublished February 9, 2022 by NORD
Request for Proposal (RFP) Copy and design for NORD’s 2021 Annual Report BACKGROUND The National Organization for Rare Disorders® (NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to …
Continue reading “Request for Proposal: NORD’s 2021 Annual Report”
Read morePublished February 3, 2022 by NORD
Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare …
Continue reading “NORD Gives Back: Advocacy and Action”
Read morePublished December 15, 2021 by NORD
Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in …
Read morePublished 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”
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