Madrid and Washington, D.C.—May 28, 2015—The global voice for rare disease patients launches today. More than 60 patient representatives from 30 countries are gathering in Madrid, …
NORD President and CEO Peter L. Saltonstall today issued the following statement on the approval by the House Energy and Commerce Committee of the 21st Century Cures legislative initiative and …
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 …