Rare Disease News

Miss Iron County Supports Rare Disease Advocacy and Awareness

Published July 29, 2015 by NORD

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Miss Iron County explains how she supports rare disease advocacy and awareness during a Miss Utah competition.

Rare Action™ Road Tour, Houston, TX

Published July 28, 2015 by NORD

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Howdy from Houston, The drive from Mobile, Alabama was a bit of a nightmare. The I-10 was jammed for hours so I finally thought, “hey, lets just take some byways …

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Rare Action™ Road Tour, Tallahassee, FL

Published July 28, 2015 by NORD

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Greetings from Tallahassee, As Einstein famously postulated, time is relative. I will make use of this fact to take you back in time to my visit to Tallahassee, Florida (schedules …

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Member Spotlight: LGDA

Published July 27, 2015 by NORD

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LGDA, Lymphangiomatosis & Gorham’s Disease Alliance works hard to support people affected by lymphatic anomalies. Read more about this spotlight member:

Rare Action™ Road Tour, Atlanta, GA

Published July 23, 2015 by NORD

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Greetings from Atlanta, Georgia. I am happy to introduce NORD’s State Ambassador for Georgia, Beth Nguyen. Beth is a registered nurse and Executive Director of Worldwide Syringomyelia & Chiari Task Force …

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Q & A with Russ Illes, Author of Duct Tape Won’t Fix This

Published June 19, 2015 by NORD

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What can’t duct tape fix? Russ Illes, author of Duct Tape Won’t Fix This: A Father’s Perspective on Raising a Chronically Ill Child (Riverhaven Books) says men love to use …

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Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases

Published June 17, 2015 by NORD

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Today, the National Organization for Rare Disorders (NORD), Biotechnology Industry Organization (BIO), and Ernst & Young released “Impact of the Orphan Drug Tax Credit on Treatments for Rare Diseases,” …

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Global Voice for Rare Disease Patients Launches Today: Rare Diseases International

Published May 28, 2015 by NORD

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Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …

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NORD Issues Statement on Today’s Approval of the 21st Century Cures Initiative

Published May 21, 2015 by NORD

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NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …

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2015 Rare Disease and Orphan Products Breakthrough Summit

Published May 13, 2015 by NORD

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Save the Date for NORD’s Annual breakthrough summit.

Rare Disease News

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