Rare Disease News

Saida’s Story of Strength

Published October 5, 2021 by NORD

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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 …

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

Published September 30, 2021 by NORD

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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 …

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Timing and Access: Katherine’s Rare Cancer Story

Published September 30, 2021 by NORD

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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 …

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

Published September 30, 2021 by NORD

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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 …

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Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Published September 29, 2021 by NORD

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Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is …

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Head of the Herd: David Arons, National Brain Tumor Society

Published September 28, 2021 by NORD

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David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …

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Still Rare After 50 Years: Andrea’s Rare Cancer Story

Published September 24, 2021 by NORD

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One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months …

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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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