CZI Rare As One Archive

Science evolving is a good thing, but it’s not always the answer you hope for.

Riley Blevins went to work for Cure HHT in hopes of helping his son. But turns out, he wouldn't be the one doing the saving.

This is the story of a type-A rare disease mom who tries for years, but can't undo her daughter's brain damage, so she sets out to stop other children from facing the same fate, and learns in the interim that "giving up" is just what you need to do sometimes.

When Melissa Chaikof receives first learns that her daughters are profoundly deaf and then, when they are older, that they are also going blind, she cannot sit back and wait for others to find a cure.

In an unexpected twist of where he thought his life would take him, Jeff finds one of his greatest purposes in life raising awareness of and helping find therapies for rare diseases.

A scientist used to compartmentalize as a way of emotional preservation but learned to harness the anxiety that comes with being a rare disease caregiver to help patients with her children's rare disease.

Carmen Camacho's story spans decades, but her journey is just beginning.

Do you know what happens when a Type A fixer turns into a rare disease mom warrior? Then have a listen!

A mother's journey with self-identity while navigating her two-year-old son's rare genetic epilepsy.

Prepare to be entertained by the thrilling saga of Dorie's fearless teenage driving escapades!