News

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...

What’s it like to participate in an epilepsy drug trial? How do you find the right trial? What should you know before participating? And what can you do if the epilepsy is so rare that...