Rare Disease News

Living with ALPS

Published March 24, 2016 by NORD

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Patient Stories

When Nicole was six months old, her mother, Laura Roublick, knew something was not right. After Nicole’s first year check-up, her doctors sent them on a long journey filled with …

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Tougher than an NFL Football Player

Published March 17, 2016 by NORD

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Patient Stories

“That would have been the easy way, but I chose to fight every step of the way!” Although Brenda Fregger was born with a rare genetic marker called HLA B27, …

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Today is Rare Disease Day®

Published February 29, 2016 by NORD

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On this day, join the 30 million Americans who are making the voice of rare diseases heard. Your participation on Rare Disease Day means more awareness and hope for 1 in …

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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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