Published May 14, 2015 by NORD
Yusuf Patel is a 12-year-old rare disease patient and advocate who is helping to save the lives of other children. His journey began at 9 months old, on a flight …
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Read morePublished May 9, 2015 by NORD
Why NORD volunteer, Norman Winnerman, has a connection to Cornelia de Lange Syndrome on CdLS Awareness Day.
Read morePublished May 6, 2015 by NORD
In a race against time, Glenn and Cara O’Neill have quarantined their family for nearly one year to try and save their daughter, Eliza. Eliza, 5, has Sanfilippo Syndrome, a …
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Read morePublished May 5, 2015 by NORD
Savannah Hollis, a healthy three-sport athlete who had just turned 21, was one week into her senior year at the University of Louisiana at Lafayette when a sudden internal bleeding …
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Read morePublished May 2, 2015 by NORD
At the age of 15, Sophia Hanson was attending boarding school in Chicago at Lake Forest Academy. She loved running for the cross-country team, where she would run up to …
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Read morePublished May 1, 2015 by NORD
“The good thing about being diagnosed with Neurofibromatosis is that I can help other people with it,” says Bailey Gribben. Bailey and his mom remember the days before his diagnosis: …
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Read morePublished April 28, 2015 by NORD
“I tell my story because it makes people realize how lucky they are in life, and hug their kids a little bit tighter at night.” These are the courageous words …
Continue reading “2015 Portraits of Courage Honoree, Tony Ferrandino”
Read morePublished April 27, 2015 by NORD
Laura Crandall was suddenly and unexpectedly confronted with the death of her healthy toddler after a nap. She has bravely turned her loss into the greatest gain for this rare …
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Read morePublished April 27, 2015 by NORD
At just 13 years old, Emily Argersinger decided to climb the highest peak in the northeast, Mount Washington. She did this to raise awareness of Sturge-Weber Syndrome – for …
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Read morePublished April 26, 2015 by NORD
Devin Alvarez is a remarkable 18-year-old who has undergone 44 surgeries related to Sprengel Deformity, a rare disease in which the shoulder blade is displaced upward, causing skeletal and muscular …
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