Rare Disease News

Join us at the 2018 NORD Rare Summit

Published August 9, 2018 by NORD

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Dear Reader, I want to invite you to join me and 700 others from the rare disease community at our annual Summit. This year, NORD’s 2018 Rare Diseases and Orphan …

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NORD Invites Video Submissions on Advocacy Experience

Published August 1, 2018 by NORD

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Washington, D.C., August 1, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has issued a call …

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NORD Responds to the Administration’s “Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs”

Published July 17, 2018 by NORD

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Advocacy

Washington, D.C., July 17, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement after responding to …

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FDA Commissioner Dr. Scott Gottlieb Confirmed as 2018 NORD Rare Summit Keynote Speaker

Published July 11, 2018 by NORD

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Dr. Scott Gottlieb was sworn in as the 23rd Commissioner of Food and Drug Administration in 2017, and provided a keynote speech at the NORD Rare Summit shortly thereafter. 2018 …

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NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies

Published June 27, 2018 by NORD

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Advocacy

Washington, D.C., June 27, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding this week’s …

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Last Rare Disease Day Event of 2018 a Success in Pennsylania

Published June 20, 2018 by NORD

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*The following article ran 6/19/2018 via Pennsylvania Legislative Services, an online legislative research, tracking, media, and analysis service providing access to Pennsylvania’s policy making process. SUPPORTERS, LAWMAKERS CELEBRATE RARE DISEASE AWARENESS …

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NORD Meets with HHS Secretary Azar to Discuss Needs of Rare Disease Patients

Published June 15, 2018 by NORD

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Washington, D.C., June 15, 2018—On Wednesday, staff from the National Organization for Rare Disorders (NORD) met with Health and Human Services (HHS) Secretary Alex Azar to discuss the needs of …

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NORD Issues Statement on Increasing Use of CoPay Accumulator Programs in Health Plans

Published June 4, 2018 by NORD

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Washington, D.C., June, 4, 2018 —The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement on …

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A Celebration of NORD’s 35th Anniversary

Published May 31, 2018 by NORD

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On Thursday, May 17 at the Andrew W. Mellon Auditorium in Washington, D.C. the rare disease community came together to celebrate NORD’s 35th Anniversary and to recognize the amazing accomplishments …

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NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Published May 29, 2018 by NORD

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Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world …

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