Sophie spent years fighting for a son no one could diagnose. Then a letter arrived with six letters and a number.
Read More"The Problem Solver," by Seung Chun
When Seung Chun’s young son is diagnosed with a rare genetic mutation, she tries desperately to find a treatment.
Read More"When Laughter Becomes an Opportunity," by Lauren Beauregard
When her daughter’s rare condition attracts attention from strangers, Lauren Beauregard worries about the impact it has on her.
Read More"What am I doing?" by Christine Kelly
When Christine Kelly is in her freshman year of college, she’s diagnosed with Hodgkin's lymphoma.
Read More"Finding the Trailhead," by Jane Gunther
After a year of dating, Jane Gunther’s boyfriend reveals that his family has a rare disease.
Read More"Still Fighting," by Angie Weaver
Angie Weaver holds onto an unshakable belief that her daughter, who has a rare SCN2A disorder, will beat the odds.
Read More"Standing Together," by Carlos Guerrero Anderson
After multiple relapses, Carlos Guerrero-Anderson takes a chance on an experimental treatment for his rare cancer.
Read More"The Dream Job," by Zollie Yavarow
One scientist's journey to finding her dream job began with the announcement of the first gene-edited humans.
Read More"The Advocate I Never Planned to Become," by Necia Sabin
Necia shares her journey to finding her voice to help others.
Read More"Finding Our Voice," by Amanda Gale
When her toddler is diagnosed with a rare genetic disorder that disrupts communication, Amanda Gale must learn how to interpret sound without language.
Read More"A STAR Lights the Way," by Jessica Foglio
Jessica Foglio was a singer, deeply committed to her craft. Then everything changed when her son was born with a genetic disorder.
Read More"The Simple, Powerful Act of Sharing Knowledge," by Ana Pataki
What began as her family’s journey through our younger son’s rare pediatric cancer diagnosis became Ana’s path into patient advocacy.
Read More"Up at Night," by Jennifer Sills
After being told “good luck” was the only plan for her daughter’s rare disease, a mother finds a path forward for her family and others around the world.
Read More"Flying Fish," by Andrew Longenecker
A fish, a bird, and a flying child reshaped everything Andrew Longenecker thought he knew about love, science, and resilience.
Read More"This Tiny Voice Inside My Head," by Liat Vaknin-Nisan
Liat Vaknin-Nisan shares a defining moment from her daughter’s hospitalization, when fear, medical uncertainty, and maternal instinct collided—and her voice became essential.
Read More"My Sister Callie," by Rocky Tucker
Rocky Tucker’s younger sister Callie is the 121st person to be diagnosed with Alstrom syndrome.
Read More"Until We Weren't," by Cat Woolrich
Cat’s young son Callum has a seizure.
Read More"We Can Still Go To Zambia, Right?," by Shayanne Martin
Shayanne Martin dreams of doing community health work in Zambia, but when her daughter is born with a host of medical challenges, she suddenly finds herself wondering whether the future she imagined is still within reach.
Read More"Hope for Our Entire Family," by Jenifer Merriam
Jenifer Merriam's 14-year-old daughter started dropping her pencil and her hairbrush, and struggled with her studies. Something wasn’t right.
Read More"The Bridge That Built Me," by Ivana Badnjarevic
The Old Bridge in Heidelberg became the metaphoric turning point where a mother transformed from engineer to patient advocate, building a supportive network for families affected by rare neurotransmitter diseases.
Read More