Rare Disease News

NORD’s Debbie Drell Interviewed on “Connecting ALS” Podcast for Rare Disease Day

Published February 25, 2021 by NORD

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The ALS Association’s podcast, Connecting ALS, interviewed NORD Director of Membership Debbie Drell for a special Rare Disease Day episode, streaming now. The conversation touched on the origins of Rare …

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Tara O’s Story in Honor of Rare Disease Day

Published February 24, 2021 by NORD

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Rare Disease Day is important to me because I live with multiple rare diseases: narcolepsy type 2 and fibromyalgia, and I also suffer from chronic migraines. I had symptoms of narcolepsy for twenty years before I was finally diagnosed and was misdiagnosed with several …

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National Attention for Rare Disease Day Airs on Lifetime Television

Published February 24, 2021 by NORD

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This morning, a special Rare Disease Day segment of Behind the Mystery, the recurring rare disease series on Lifetime Television’s award-winning morning show The Balancing Act, aired at 7:30am ET. …

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Ramona’s Story in Honor of Rare Disease Day

Published February 23, 2021 by NORD

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I am a patient diagnosed with autoimmune neutropenia and AA amyloidosis (renal) which affects my kidneys. My symptoms include fatigue, shortness of breath, low white blood cells, anemia and stress. I have also been suspected of Behcet’s disease, but doctors have not confirmed this diagnosis. I …

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Tara Z’s Story in Honor of Rare Disease Day

Published February 23, 2021 by NORD

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I was diagnosed with stiff person syndrome (SPS) on a Monday night in October of 2017. The impact of my condition on my life has been tremendous. My symptoms started after I lost my former husband to …

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Hudson’s Story in Honor of Rare Disease Day

Published February 22, 2021 by NORD

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I faced lot of challenges both socially and academically throughout my life. However, with a lot of love from my mother and godly mentors, I was able to overcome many …

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Rare Disease Patient Advocate Tristan Lee Shares His Story with WebMD for Rare Disease Day

Published February 22, 2021 by NORD

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Tristan Lee, a 37-year-old Pennsylvania man who has lived with sickle cell disease since birth, is a patient advocate with Sickle Cell Disease Association of America, a NORD member organization. …

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Amy’s Story in Honor of Rare Disease Day

Published February 12, 2021 by NORD

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I am a patient who has lived with systemic scleroderma for over nineteen years, having been diagnosed as a teenager. Rare Disease Day is a day when I get to feel like I am making a difference …

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Ashlee’s Story in Honor of Rare Disease Day

Published February 12, 2021 by NORD

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I was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with …

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NORD Featured in BioNews Service Article on Rare Disease Day Happenings

Published February 10, 2021 by NORD

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In “Pandemic Won’t Stop Rare Disease Day on Feb. 28,” an article by BioNews Service’s Mary Chapman that ran on 2.10 and is being picked up by 25+ of BioNews’ …

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