CZI Biohub Rare As One Archive

In the summer of 2016, Linda Martin received a call from her husband that changed her life forever.

Three Aboriginal children hold the key for unlocking important medical insights.

In the first few months of her baby’s life, Leah Myers worries that something is off.

Having become a mother at 18, this is supposed to be the year Katie Stevens figures out who she is — but then she discovers her 12-year-old son is terribly ill.

Allison Peck and her husband are faced with the harsh reality of the genetic disease IBMPFD when their three-year-old outruns him.

Amy Wood struggles to cope with her son's sudden brain tumor diagnosis, and managing the lifelong effects of his benign craniopharyngioma.

Kim McClellan reflects on her lifelong battle with recurrent respiratory papillomatosis and learns how to use her voice to fight for change.

After witnessing the disconnect between researchers and families struggling with mental illness, Kit Donohue is determined to bridge the gap between science and the people it aims to help.

After Mary Vyas’s son is diagnosed with PSC,, she is determined to be a living liver donor.

Lakeia Nard fights for answers to her son's rare disease.

Emily Ventura is desperate to find answers about her baby’s mysterious illness.

When Axel Lankenau is told that both of his sons have an ultra-rare, life-limiting neurological disorder, he is forced to confront a future he never imagined.

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!