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 …
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 …
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 …
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 …
“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: …
“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 …
Paul Melmeyer, NORD’s Assistant Director of Public Policy, attended the FDA’s public meeting on Chagas Disease Patient-Focused Drug Development on April 28. Chagas is a rare parasitic disease (read NORD’s …