Rare Disease News

Fighting for Barry: Alexis’s Story in Honor of Rare Disease Day

Published February 14, 2023 by NORD

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Patient Stories

My brother, Barry, was born when I was two years old with what we called, at the time, an “unspecified neurological condition.” He faced a host of medical issues, the …

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Rare Resilience: Tracey’s Story in Honor of Rare Disease Day

Published February 7, 2023 by NORD

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Patient Stories

In 2005, I was in a serious motor vehicle accident and sustained a traumatic brain injury (TBI). Before this, I was in the third year of my PhD studies in …

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The Many Hats of a Caregiver: Elizabeth’s Story for Rare Disease Day

Published January 28, 2023 by NORD

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Patient Stories

I am a caregiver to my 2 ½ year old son who has hypophosphatasia (HPP). He was diagnosed right before he turned 6 months. My son showed signs that he …

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Kiera’s Rare Disease Journey

Published January 18, 2023 by NORD

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Patient Stories

My rare disease is called sporadic visceral neuropathy. There are only four known recorded cases worldwide and very little research on the disease. My diagnosis is relatively new — late …

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A Husband’s View on How Motivated Moms Have a Hidden Extra Gear

Published December 29, 2022 by NORD

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Patient Stories

By Brian J. Lane Sunday morning. I slept in. It’s 8:30 or maybe 9:30, who the heck knows? It’s a Sunday after all. I roll over and wipe some drool …

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Jan’s Story of Hope

Published December 1, 2022 by NORD

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Patient Stories

My journey with cholangiocarcinoma (also known as bile duct cancer) began when my mom was diagnosed with the same rare cancer and passed away in 2011. In 2018, I was …

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Honoring Steven Matthews This Rare Cancer Day

Published September 30, 2022 by NORD

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September 30 is #RareCancerDay, an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. NORD is highlighting the stories of …

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Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy

Published September 28, 2022 by NORD

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Washington, DC, September 28, 2022— This week, the rare disease community will celebrate the fourth annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer …

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Unanswered Questions: Leah’s Rare Cancer Story

Published September 16, 2022 by NORD

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Patient Stories

My life has been completely altered by rare diseases, specifically rare cancer. During my pregnancy with my 2nd child, I had stage IV sarcoma. Doctors were unable to tell me …

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