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.

After dreams of a perfect parenthood, Maddison was thrown into the rare disease world and became an unexpected advocate for her daughter and others in the Glut1 Deficiency Community.

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.

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.

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

After a year of seeking answers and a diagnosis for her toddler son’s delays and seizure, Erin Coller shares how, one Super Bowl Sunday, a phone call from the neurologist changed their lives forever.

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

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.