Rare Disease News

Rare Disease Advocates Host a Save the Orphan Drug Tax Credit Rally

Published November 28, 2017 by NORD

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Patients speak out as Congress moves forward with a tax bill that would negatively impact individuals with rare diseases Washington, D.C., November 28, 2017 – Today, the National Organization for …

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Statement by 91 Patient Organizations in Opposition to the House of Representatives’ Repeal of the Orphan Drug Tax Credit

Published November 20, 2017 by NORD

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Washington, D.C., November 20, 2017 – “Last week, the House of Representatives voted to repeal the Orphan Drug Tax Credit (ODTC) as part of the Tax Reform and Jobs Act …

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Statement by 36 Patient Organizations in Opposition to Senate’s Proposed Weakening of the Orphan Drug Tax Credit

Published November 14, 2017 by NORD

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Washington, D.C., November 14, 2017 – “Today, the Senate Finance Committee continues its consideration of the Tax Cuts and Jobs Act. Our organizations, which collectively represent millions of individuals with …

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NORD Issues Statement in Response to Senate Finance Committee’s Proposal to Weaken the Orphan Drug Tax Credit

Published November 10, 2017 by NORD

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Washington, D.C., November 10, 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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More Than 200 Patient Groups Call On Congress to Reinstate the Orphan Drug Tax Credit in the Tax Cuts and Jobs Act

Published November 8, 2017 by NORD

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Show your support for the Orphan Drug Tax Credit!

NORD Issues Statement in Response to Proposed Repeal of the Orphan Drug Tax Credit (ODTC)

Published November 2, 2017 by NORD

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Washington, D.C., November 2, 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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Join NORD & SSA in Forum on Compassionate Allowances & Rare Diseases

Published October 31, 2017 by NORD

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NORD Board Chair Marshall Summar MD will moderate a National Disability Forum on Compassionate Allowances and Rare Diseases to be hosted by the Social Security Administration (SSA) on Tuesday, Nov. …

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NORD Releases New Documentary called “Good Morning Peyton”

Published October 26, 2017 by NORD

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View the full documentary. Danbury, C.T., October 26, 2017 – Imagine never being allowed to feel the sun on your skin. For 11-year-old Peyton, who is allergic to sunlight, that is …

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NORD Issues Statement on Senate Leadership’s Recent Update on “Graham-Cassidy” Proposal

Published September 26, 2017 by NORD

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Washington, D.C., September 26, 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 the …

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Protecting Your Healthcare Coverage

Published September 26, 2017 by NORD

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Stay informed on what NORD is doing to address the Affordable Care Act for rare disease patients.