Rare Disease News

NORD Gives Back: Advocacy and Action

Published February 3, 2022 by NORD

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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 …

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Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

Published December 15, 2021 by NORD

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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 …

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How to Light Up for Rare – Rare Disease Day 2022

Published December 14, 2021 by NORD

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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 …

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NORD’s Response to the House Passage of the Build Back Better Act

Published November 19, 2021 by NORD

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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 …

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With the Build Back Better Act, Congress Threatens Progress for Americans with Rare Diseases

Published November 18, 2021 by NORD

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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 …

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Protecting Patients and Telehealth Access: Over 230 National Organizations Urge Governors Across the Country to Maintain and Expand Licensure Flexibilities Throughout Federal Public Health Emergency

Published November 1, 2021 by NORD

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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 …

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NORD Response to New Draft of the Build Back Better Act

Published October 29, 2021 by NORD

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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 …

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A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Published September 17, 2021 by NORD

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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 …

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NORD Statement on Proposed Changes to the Orphan Drug Tax Credit

Published September 13, 2021 by NORD

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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 …

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Newborn Screening: History, Future and Awareness Month

Published September 1, 2021 by NORD

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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 …

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