Rare Disease News

The Will to Live and the Strength for a Cure

Published December 18, 2014 by NORD

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The day Joshua Frase was born, his parents Alison and Paul, were given grave news about…

Portraits of Courage Celebration

Published November 25, 2014 by NORD

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Join us on May 2015 in Washington DC to celebrate the successes of the rare disease community.

NORD Launches Rare Action Network

Published November 25, 2014 by NORD

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NORD launches the nation’s only Rare advocacy network.

Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Published November 5, 2014 by NORD

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Vanessa Devore’s father, Octavio Armenta was never diagnosed, and neither was her grandfather. Hailing from Guadalajara, Mexico, she represents a legacy of fighters against an unknown disease, as the pioneer in her …

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Taking Action for ACD

Published October 7, 2014 by NORD

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On February 20th, 2013, Eliza and John Rista of Huntersville, North Carolina were blessed with an uncomplicated pregnancy, and a healthy, full-term baby boy weighing 8 pounds and 6 ounces. …

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Medical Research Should Be Everyone’s Priority

Published September 25, 2014 by NORD

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It’s truly amazing to hear everyone’s unique personal story on why medical research is important to them. Whether it’s a parent whose son or daughter is living with a rare …

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Living with Blood Cancer

Published September 16, 2014 by NORD

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Editor’s note: The following blog is being published to highlight Blood Cancer Awareness Month and MPN Awareness Day. I was diagnosed with essential thrombocythemia (ET) at age 16 after …

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The Will to Live and the Strength for a Cure

Published August 18, 2014 by NORD

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The day Joshua Frase was born, his parents Alison and Paul, were given grave news about their newborn’s life – he most likely would not survive that day. His weakened …

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NORD Recommendations for Advancing Drug Discovery, Development, and Delivery

Published June 17, 2014 by NORD

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On behalf of the millions of Americans who have diseases with little or no treatment, the National Organization for Rare Disorders (NORD) has submitted a seven-step plan to the 21st …

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Not a Dry Eye in the Room: Families Tell FDA about Their Daily Struggles

Published June 11, 2014 by NORD

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June 10th was an emotional – but very educational – day for everyone who attended the Food and Drug Administration’s public meeting on Patient-Focused Drug Development for Inborn Errors of …

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