As a parent of a child with a rare and complex medical condition, every outing can feel like a high-stakes operation...

A tethered spinal cord (or tethered spinal cord syndrome) is a developmental abnormality that occurs in about 2 of every 1,000 births...

In the wild ride of parenthood, nothing quite prepares you for the unexpected twists and turns that life throws your way.

Today, we bring you the heartfelt testament of Amber, a devoted mother and caregiver, whose journey with her daughter Ryiah...

Life often takes unexpected turns, leading us down paths we never imagined. For Shannon, the mother of an extraordinary eight-year-old...

In the complexities of caregiving every day presents a unique set of challenges and triumphs.

Confessions of a Rare Disease Mom - the Podcast.

On a recent visit to the emergency room, it took just seconds for Samantha Brant to pull up a detailed, up-to-date medication list...

In the vast expanse of the medical world, a journey towards diagnosis can often feel like navigating the open seas without a compass...