Most 18-year-olds are focused on graduation, prom, college, and new beginnings. For Madison “Maddie” Hoffman, the future is bright, and her journey there has required a level of strength most people won’t face in a lifetime. Born with epidermolytic …
Meet EvalynFour-year-old Evalyn Scuderi is like any other toddler: she loves Moana, lights, music, swimming and being hugged. Vivacious Evalyn is one of many patients at Cook Children’s born with a rare disease.She was diagnosed with Trisomy 18, …
Colton Ragsdale is done with reading time. Gayla Baldacci, special education teacher at Jo Kelly School, gives him his eye-gaze tablet, a device that allows users to control it and communicate using their eyes. Colton tells her whether he wants to …
Today is Rare Disease Day and we’re sharing the story of one of our patients, 3-year-old Greyson, who was diagnosed with PURA Syndrome when he was 2 years old. Only about 500 people in the world share the same diagnosis.Greyson’s diagnostic odyssey …
Feb. 28 is Rare Disease Day. But you might be surprised to learn many of these diseases really aren’t as “rare” as you might think.
A rare disease is defined as any disease affecting fewer than 200,000 people in the U.S.1 While …