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.

Zoe Wisnoski's son has a high fever so she searches for answers that are not always so easily given.

When a doctor offers only a shrug in response to her daughter’s exam, Yssa DeWoody sets off on her path to becoming an advocate.

When Tracy Milne's young son is diagnosed with a rare disease, she finds hope in community.

Scientific Director Tanya Brown shares her story of growing in confidence as a scientist, inspired by her mother's resilience and perseverance.

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.

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 a story about fixing an impossible problem in an unexpected way.

Julie Raskin recalls her son's birth and strange variation of nursing and sleep of the first two days of his life.

This is a story about one family's rare disease journey and the birth of a community.

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.

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.

Elizabeth Ann has trouble adjusting to a career at a non-profit, until something clicks about what it means to advocate for rare disease.

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!

Avery Roberts is breaking down barriers tackling misconceptions surrounding disability and giving a loud voice to the, often-forgotten, rare disease community.

A mother recounts her journey as her 3-year-old daughter battles Kawasaki disease, a rare and potentially life-threatening condition.

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!