Kim Nye’s two children were the only known patients in the world with their rare condition, which caused over 100 seizures per day. Kim then launched the TESS Research Foundation to find more patients and advance research to accelerate treatments and cures.

300+ million people globally suffer from a rare disease and 50% of them are children. When patients and their loved ones work together with researchers, they create a powerful community fighting to improve disease diagnosis and to find treatments and cures for their family members. The Rare As One Network supports patient-led organizations like TESS Research Foundation to better understand rare diseases. Watch their inspiring story and subscribe to our YouTube channel to stay up to date.