TOPIC: Uncategorized
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
TOPIC: Uncategorized
Talk about inspiring–today, members of the Running for Rare Diseases Marathon Team will pound out 26.2 miles in chilly temps while running the Boston Marathon on behalf of rare disease patients!
Boston Marathon 2015: Mile 14 NORD and Running… Read More
TOPIC: Uncategorized
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
TOPIC: Featured News
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
TOPIC: Uncategorized
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
