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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

March 27, 2015

TOPIC: Uncategorized

Can Crowdfunding Help Cure a Rare Disease? Cure Black Bone Disease: Time Is Running Out.

Posted by Lisa Sencen

Crowdfunding is a way of raising money to fund a specific project or fullfil a specific goal in a relatively short amount of time. It involves asking a large number of people for a small contribution to the project. The method is not just about getting money- it is about developing support from a crowd of people who believe… Read More