Rare Disease News

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Published April 18, 2018 by NORD

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An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would …

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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.

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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Early Diagnosis: Perspectives from NORD Student Chapter Leader, Harjot Randhawa

Published January 18, 2018 by NORD

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During the 2017 Rare Diseases & Orphan Products Breakthrough Summit over 700 individuals from the rare disease community gathered to advance the dialogue in rare diseases. NORD was pleased to …

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NORD Launches 7,000 Mile Rare Movement

Published January 16, 2018 by NORD

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THE NATIONAL ORGANIZATION FOR RARE DISORDERS (NORD) LAUNCHES 7,000 MILE RARE MOVEMENT CHALLENGING AMERICANS TO CHART 7,000 MILES DURING MONTH OF FEBRUARY Americans to walk, bike or run 7,000 miles …

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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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