Rare Disease News

Honoring the Rock Stars of the Rare Disease Community: NORD Announces the 2022 Rare Impact Award Honorees

Published March 15, 2022 by NORD

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NORD’s Rare Impact Award ceremony on June 26 will honor all those making strides to improve the lives of patients and families in the rare disease community Cleveland, OH, March …

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Navigating Diversity, Equity and Inclusion in Rare Disease Nonprofits

Published March 3, 2022 by NORD

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NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community Washington, DC, March 3, 2022— Today, the National …

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The Most Important Holiday Most Don’t Know: Celebrating Rare Disease Day

Published February 28, 2022 by NORD

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NORD, the official US sponsor of Rare Disease Day, is a leading voice raising awareness among the public and decision-makers about the challenges faced by the rare disease community February …

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A Rare Report Card: NORD Grades All 50 States on Rare Disease Policy Issues

Published February 22, 2022 by NORD

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NORD’s State Report Card Provides Critical Analysis Across Nine Policy Areas, Including Telehealth, Drug Costs, Medicaid Eligibility, and More February 22, 2022, Washington, DC – Today, the National Organization for …

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Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2022

Published February 17, 2022 by NORD

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Organizations and individuals from across the country are partnering with NORD to help make a difference for rare disease patients and families on Rare Disease Day 2022 February 17, 2022, …

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NORD Applauds Confirmation of Robert Califf as Commissioner of the Food and Drug Administration

Published February 15, 2022 by NORD

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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 …

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NORD’s RareLaunch Program Announces Expanded Course Learning to Help Launch and Grow Rare Disease Nonprofits

Published January 20, 2022 by NORD

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RareLaunch provides critical hands-on learning and support to build capacity for rare disease-focused organizations January 20, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) announced enhanced …

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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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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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The Gorlin Syndrome Alliance and NORD Launch Natural History Study for Gorlin Syndrome

Published November 18, 2021 by NORD

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Reading, PA, November 18, 2021—Today, the Gorlin Syndrome Alliance (GSA) and the National Organization for Rare Disorders (NORD)® launched the largest-ever study to research Gorlin syndrome, a rare disease that …

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