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April 27, 2015

TOPIC: Uncategorized

2015 Portraits of Courage Honoree: Emily Argersinger

Posted by Jennifer Huron


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 herself, and for every other patient with this rare disease.

Mt. Washington is famous for its dangerously erratic weather.   Emily had never been on a major hike.  However, once she came… Read More

April 26, 2015

TOPIC: Uncategorized

Get to Know Portraits of Courage Honoree, Devin Alvarez

Posted by Jennifer Huron

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 deformities and medical complications. 

“My back is full of scars because of all my surgeries.  When I look at myself in… Read More

April 13, 2015

TOPIC: Uncategorized

Announcing the 2015 Portraits of Courage Honorees

Posted by Jennifer Huron

On May 19, on one of the rare disease community’s biggest nights, we will honor the patients, leaders and innovators who are moving the community forward at NORD’s annual Portraits of Courage Gala in Washington, D.C.  More than 500… Read More

April 10, 2015

TOPIC: Featured News

Lauren Hill Dies at 19 after Battle with Brain Cancer, DIPG

Posted by Lisa Sencen

This article was originally published by USA TODAY Sports

Lauren Hill touched a nation with her desire to play for Mount St. Joseph’s women’s basketball team, even as she battled an inoperable brain tumor.

Her resolve, spirit and courage were celebrated Nov. 2 when she realized her dream at Xavier University’s Cintas Center. Cheered on by a sold-out crowd of… Read More