Rare Disease News

Your Help is Needed to #SaveCHIP

Published January 10, 2018 by NORD

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Today, advocates across the country are joining together to #SaveCHIP! The Children’s Health Insurance Program (CHIP) is a critical program that provides 9 million children and pregnant women across the …

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Nominations for the Rare Impact Awards Close Friday, January 12

Published January 9, 2018 by NORD

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Do you know a person or company making a difference in the fight against rare diseases? We want to hear about them! Submit a nomination for the 2018 Rare Impact Awards by this …

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Join Us for Rare Disease Day®

Published December 21, 2017 by NORD

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Learn how to get involved with the biggest day of the year for the rare disease community.

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 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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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.

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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Downloadable Hurricane Harvey Emergency Relief Resources

Published August 31, 2017 by NORD

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Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be …

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Advance the Dialogue at the NORD Rare Summit

Published August 15, 2017 by NORD

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Register now for the NORD Rare Summit to advance the dialogue on issues of unprecedented importance to the rare disease community.

The BCRA and Healthcare Reform: NORD’s Latest Update

Published July 20, 2017 by NORD

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A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved. As part of our “Days of Action …

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