Emily Ventura is desperate to find answers about her baby’s mysterious illness.
Read More"A Picture Frame," by Axel Lankenau
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.
Read More"Never Giving Up, One More Time ," by Nikki Stusick
Science evolving is a good thing, but it’s not always the answer you hope for.
Read More"Thankful," by Riley Blevins
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.
Read More"Giving Up," by Heidi Wallis
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.
Read More"Finding My Community," by Elizabeth Ann
Elizabeth Ann has trouble adjusting to a career at a non-profit, until something clicks about what it means to advocate for rare disease.
Read More"Rare Resilience," by Ann Geffen
A mother recounts her journey as her 3-year-old daughter battles Kawasaki disease, a rare and potentially life-threatening condition.
Read More"Searching for Answers," by Zoe Wisnoski
Zoe Wisnoski's son has a high fever so she searches for answers that are not always so easily given.
Read More"Finding Confidence," by Tanya Brown
Scientific Director Tanya Brown shares her story of growing in confidence as a scientist, inspired by her mother's resilience and perseverance.
Read More"Answering the Shrug," by Yssa DeWoody
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.
Read More"Reason to Hope," by Melissa Chaikof
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.
Read More"The Power of Finding Your Community," by Tracy Milne
When Tracy Milne's young son is diagnosed with a rare disease, she finds hope in community.
Read More"The Day My World Changed," by Maddison Hall
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.
Read More"Can We Fix It?" by Kasha Morris
This is a story about fixing an impossible problem in an unexpected way.
Read More"What's Wrong With My Baby?" by Julie Raskin
Julie Raskin recalls her son's birth and strange variation of nursing and sleep of the first two days of his life.
Read More"That 'Spinning Room' Moment," by Jill Kiernan
This is a story about one family's rare disease journey and the birth of a community.
Read More"Driving Miss Dorie," by Dorie Shapiro
Prepare to be entertained by the thrilling saga of Dorie's fearless teenage driving escapades!
Read More"Super Bowl Sunday: Diagnosis Day," by Erin Coller
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.
Read More"Wrestling with an Estranged Father's Legacy," by Jeff Levenson
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.
Read More"Heart vs. Brain," by Cassi Friday
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.
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