Rare Disease News

New Study Examines Use and Cost of Orphan Drugs

Published October 17, 2017 by NORD

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Press Releases

Orphan Drugs Account for Only 7.9% of Drug Spending in the U.S. Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, …

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Registration Open!

Published October 13, 2017 by NORD

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Registration is now open for the 35th Anniversary Celebration Presenting the Rare Impact Awards.

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Published October 10, 2017 by NORD

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Press Releases

Danbury, CT, October 10, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of …

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NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Published September 19, 2017 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 opposing the “Graham-Cassidy” plan to repeal …

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NORD Publishes New Rare Disease Report on Shprintzen Goldberg Syndrome (SGS)

Published September 12, 2017 by NORD

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Washington, D.C., September 15, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Shprintzen …

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NORD Publishes New Report on Sitosterolemia

Published August 28, 2017 by NORD

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Washington, D.C., August 28, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Sitosterolemia. …

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NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Published August 3, 2017 by NORD

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Washington, D.C., August 3, 2017—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 …

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NORD Issues Statement on the Better Care Reconciliation Act of 2017

Published June 22, 2017 by NORD

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Washington, D.C., June 22, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement regarding …

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NORD Publishes New Rare Disease Report on CARD9 Deficiency

Published June 13, 2017 by NORD

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Washington, D.C., June 13, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on CARD9 …

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NORD Releases Statement on Orphan Drug Assessment & Pricing Summit

Published May 31, 2017 by NORD

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Washington, D.C., May 31, 2017—NORD released the following statement in advance of today’s “Orphan Drug Assessment and Pricing Summit” held by the Institute for Clinical and Economic Review (ICER): “We are …

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