Rare Disease News

NORD Rare Action Network® 2018 State Report Card

Published March 20, 2018 by NORD

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The 2018 report has grown to cover several emerging issues. Download your copy today.

NORD Issues Statement Regarding House Vote on Right to Try

Published March 14, 2018 by NORD

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Washington, D.C., March 14, 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 in …

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83 Patient and Provider Organizations Remain Opposed to Right to Try Legislation

Published March 13, 2018 by NORD

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Yesterday evening, NORD joined 82 patient and provider organizations in sending a letter to the House of Representatives stating our opposition to the newest version of the Right to Try …

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Another Successful Rare Disease Day®

Published March 7, 2018 by NORD

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Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018. On this day, everyone comes together globally to bring …

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35 Ways to Celebrate the 35th Anniversary of NORD

Published March 5, 2018 by NORD

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2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary. For the past 35 years, NORD has taken pride in being the rare …

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NORD Joins 125 Patient Organizations in Support of Medicaid Formulary Access

Published February 25, 2018 by NORD

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Washington, D.C., February 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, last week joined 125 rare disease …

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One-pager from NORD on Opposition to Right to Try Act

Published February 13, 2018 by NORD

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Washington, D.C., February 13, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today followed up on the recent coalition letter emphasizing …

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NORD Statement Regarding State Proposals to Alter Their Medicaid Program

Published February 8, 2018 by NORD

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Washington, D.C., February 8, 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 regarding recent …

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NORD Sends Letter to House of Representatives on Right to Try Act

Published February 6, 2018 by NORD

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Washington, D.C., February 6, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, today joined 37 patient and provider organizations in …

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NORD Issues Statement on Confirmation of New Secretary of HHS, Alex Azar

Published January 26, 2018 by NORD

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Washington, D.C., January 26, 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 the confirmation by the …

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