Rare Disease News

Running on Air for Rare Disease Day

Published February 11, 2016 by NORD

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“I want to shake up what people think is possible,” says Mary Kitlowski – “ both people with rare diseases, and people without. If I can make a difference by …

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Help Tara Pass School Bus Legislation

Published December 18, 2015 by NORD

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A great supporter of NORD, Tara Notrica, sent some staff members at NORD the following letter with the determination to get an important piece of legislation passed. We’re happy to share her …

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Get Involved in Your State on Rare Disease Day

Published December 17, 2015 by NORD

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On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare.

Living Bella Soul

Published November 15, 2015 by NORD

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Patient Stories

As Shannon tells her story, she starts with “we.” Shannon was born with a twin sister, Lauryn, who at twenty days of age contracted meningitis and was later diagnosed with …

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Giving Spotlight: Parents Thank NORD for Saving Daughter’s Life

Published November 9, 2015 by NORD

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Laurie and Chuck Eallonardo were thrilled at the birth of their twins, Jenna and Caden. Laurie felt happy and relieved that she had been able to carry them for 38 …

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Life with CGD

Published November 5, 2015 by NORD

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Patient Stories

In April 2013, the Cooley family welcomed their second child, Sean Ryan. After some problems regarding his weight during the pregnancy, the Cooley’s were thrilled when their healthy baby boy …

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Living with Seizure Disorder

Published November 3, 2015 by NORD

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Patient Stories

In July of 1999, Andrew Ablondi was born to two loving and excited first-time parents. Although the pregnancy was uneventful, the delivery was long and Andrew arrived with a misshapen …

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Giving Spotlight: HomeServe USA Leadership and Employees Donate More Than $26,000 to NORD

Published October 29, 2015 by NORD

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“We are proud to support the efforts of important organizations like NORD, and to have an employee base so willing to give to the communities and charities that matter to …

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They Said things like, “She’ll Grow Out of It”

Published October 28, 2015 by NORD

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Patient Stories

Abigail MacCurtain was born a happy and healthy baby girl in the winter of 2011, despite being born at 35 weeks due to Premature Rupture of Membranes (PROM). The only …

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Taking on NYC and a Rare Disease: An Introduction

Published October 28, 2015 by NORD

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Sophia Hanson is a college student and has the rare disease, Lymphedema. She is writing for NORD about the balancing act of going to college, moving away from home, and …

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