Katie Couric: Yesterday was Rare Disease Day. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% have approved treatment — yet worldwide,...
CZI’s Rare As One Network grant partners are driving scientific breakthroughs to fight for the lives of their loved ones. Kim Nye spent a decade traveling the world seeking a diagnosis for her daughter, Tessa,...
Nasha Fitter didn’t have time. There had to be a better, faster way, she thought — not just for her daughter, who recently turned 7, but for other people with rare diseases. Fitter tapped her tech...
For the first decade of their daughter's life, Tessa Nye's parents desperately sought to find the cause of her hundreds of daily seizures. But after her brother Colton started having seizures shortly after birth, their...
What do you get when you bring together mint juleps, fancy hats and bowties, a live viewing of the Kentucky Derby, and a garden full of people who want to make a difference in the...
Today, we are thrilled to share that CZI has awarded TESS an additional $150,000 and continued engagement with the RAO network (which now includes 50 patient-led organizations in the rare disease space) for another year!...
TESS Research Foundation has partnered with Uplifting Athletes, a nonprofit organization dedicated to serving the Rare Disease Community, to support young research investigators focused on rare genetic and rare muscular and neurological disorders. As part...
Full video can be found here: https://videocast.nih.gov/watch=36065...
