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Patient Stories

From a Horse to a Zebra: Dana’s Rare Disease Story

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with… Read More

Saida’s Story of Strength

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full… Read More

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many… Read More

Timing and Access: Katherine’s Rare Cancer Story

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I… Read More

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his… Read More