Rare Disease News

Registries for Rare Diseases: Involve the Patient

Published January 15, 2015 by NORD

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Research

In a new interview with Medscape, Marshall L. Summar, chief of genetics and metabolism at Children’s National Medical Center in Washington, D.C. and NORD board member, talks about the importance …

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The Will to Live and the Strength for a Cure

Published December 23, 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

Multiple Endocrine Neoplasia Type 1: One Family’s Fight

Published December 23, 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 December 23, 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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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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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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