Scroll
To Top

Patient Stories

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were ineffective in reducing… Read More

Sharing Makayla’s Voice for Rare Cancer Day

At the age of 14, I was diagnosed with a rare form of GI tract cancer called gastrointestinal stromal tumors (GIST). 

Living with a rare disease is incredibly complicated, and you must learn how to be your own best advocate…. Read More

Martin’s Fight Against Waldenstrom Macroglobulnemia

I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My knees shook when I was referred… Read More

A Life Saving Reminder – Loren’s Rare Cancer Journey

In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where they implanted a metal… Read More

Ray Stevens’ Rare Disease Reflections from 22,000 Feet

Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before reaching the mountain’s summit. According… Read More