Rare Disease News

Life is a Special Occasion

Published December 23, 2014 by NORD

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Alena Galan is a happy 16-year old girl full of life and wise beyond her years. She can light up a room with her quick-witted charm and energetic personality. She …

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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…

NORD Celebration Highlights the Courage of Children and Adults Living with Rare Diseases

Published December 1, 2014 by NORD

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

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.

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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Children’s Cardiomyopathy Awareness Month Urges Families to #KnowYourHeart this September

Published September 2, 2014 by NORD

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Carmina Taylor of Penllyn, Penn., lost her son, Dorien, to sudden cardiac arrest at age 17

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