Miah's story
Miah shares her journey from pediatric chordoma patient to thriving high school student, with unwavering support from her loved ones.
Latest patient stories
Our Uncommon Story series is an opportunity for chordoma patients and caregivers to share what they’ve learned during their experience with chordoma, and help you understand what you might expect throughout your own.
The collective wisdom of everyone affected by chordoma is making the path easier for those who come next, and we're grateful to all who have generously and courageously shared their stories here.
Shari's story
Adjusting to the change of pace brought on by chordoma led Shari to learn how to ask for help.
Karen's story
Karen, an 18-year survivor, embraces her ability to live an active life despite some limitations.
Richard's story
Finding a medical team with deep expertise in this disease made all the difference.
Young adult chordoma stories
Chordoma is even more rare in young adults than older adults, and this age group encounters unique challenges when faced with a cancer diagnosis.
We hope you'll find camaraderie in these stories, and encourage you to join our next virtual support group for young adults.
Jessica's story
Jessica found support from other young adults who helped her navigate the complexities of a recurrence.
Melissa's story
Melissa says it was surreal to be diagnosed with a cancer her doctor had never heard of.
Carlie's story
Relying on friends, family, and therapy has helped Carlie cope with the physical and mental challenges of chordoma.
Kaitlin's story
Kaitlin's chordoma diagnosis set her on a career path that she felt destined to pursue.
Long-term survivor chordoma stories
Thanks to advances in research, improvements in care, and access to more treatment options, more people than ever are living with chordoma for many years — in some cases, multiple decades.
These perspectives from long-term survivors provide plenty of hope and wisdom.
Jonathan's story
Diagnosed in 1983, his doctors told him he might live another year. Four decades later, Jonathan shares his story.
Lindsay's story
Lindsay, diagnosed in 2003, has plenty of wisdom to share with fellow survivors on this "bumpy road."
Adriane's story
"We are more than our cancer," says Adriane, who was diagnosed with chordoma in 2007.
Steven's story
Diagnosed in 2012, Steven now gives back to the chordoma community in a variety of ways.
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.
