Rare Disease News

NORD Gives Back: Advanced and Advancing Care

Published November 24, 2021 by NORD

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As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community. For this …

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NORD Gives Back: Benefits for the Newly Diagnosed

Published November 22, 2021 by NORD

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As we reach the holiday season at the end of another challenging but inspiring year, let us take time to celebrate and lift up the rare disease community. For this …

Continue reading “NORD Gives Back: Benefits for the Newly Diagnosed”

Five Disorders: Dee’s Rare Story

Published October 29, 2021 by NORD

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I have five rare disorders: Chiari malformation, intracranial hypertension, chronic Epstein-Barr virus (EBV), fibromyalgia, Hashimoto syndrome, along with a plethora of other illnesses. An infectious disease doctor once told me that I was a poster child for the medical field. However, my journey with rare disease …

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

Published October 15, 2021 by NORD

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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 …

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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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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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