Rare Disease News

Connecticut Establishes a Permanent Rare Disease Advisory Council

Published May 24, 2022 by NORD

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May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the …

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NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act

Published May 11, 2022 by NORD

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Washington, DC — The National Organization for Rare Disorders (NORD) applauds efforts of Congressional leaders to protect the Orphan Drug Act (ODA) and ensure proper incentives are in place to …

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Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

Published May 6, 2022 by NORD

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New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp …

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NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Published April 25, 2022 by NORD

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April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who …

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ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval

Published April 8, 2022 by NORD

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90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway April 8, 2022, Washington, DC – This week, the National Organization …

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New Senate Bill Would Extend Access to Telehealth After the COVID-19 Public Health Emergency Ends

Published February 25, 2022 by NORD

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Advocacy

Send a message to your representatives NOW telling them to support access to vital telehealth services. Recognizing how important access to telehealth services has been to millions of Americans during …

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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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Request for Proposal: NORD’s 2021 Annual Report

Published February 9, 2022 by NORD

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Get Involved

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 …

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