Rare Disease News

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

Published September 17, 2021 by NORD

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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 …

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Sharing Makayla’s Voice for Rare Cancer Day

Published September 10, 2021 by NORD

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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 …

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Martin’s Fight Against Waldenstrom Macroglobulnemia

Published September 3, 2021 by NORD

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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 …

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A Life Saving Reminder – Loren’s Rare Cancer Journey

Published August 27, 2021 by NORD

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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 …

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