Published February 28, 2023 by NORD
I’m the mama of two ladies who have autosomal recessive spastic ataxia of Charlevoix-Saguenay (ARSACS). We noticed symptoms at 5 years old with the first one. We went through extensive …
Continue reading “Banding Together as Zebras: Merry’s Story in Honor of Rare Disease Day”
Read morePublished February 27, 2023 by NORD
I was officially diagnosed with Stiff-person syndrome in 2017, but the onset of my disease was when I was 20. I was in college at the time and had to …
Read morePublished February 22, 2023 by NORD
My life was turned upside down when my daughter, Meredith, was diagnosed with Facioscapulohumeral muscular dystrophy (FSHD) in 2003. My son, Jonathan, was subsequently diagnosed with FSHD in 2013. Since …
Read morePublished February 14, 2023 by NORD
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 …
Continue reading “Fighting for Barry: Alexis’s Story in Honor of Rare Disease Day”
Read morePublished February 7, 2023 by NORD
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 …
Continue reading “Rare Resilience: Tracey’s Story in Honor of Rare Disease Day”
Read morePublished January 28, 2023 by NORD
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 …
Continue reading “The Many Hats of a Caregiver: Elizabeth’s Story for Rare Disease Day”
Read morePublished January 18, 2023 by NORD
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 …
Continue reading “Kiera’s Rare Disease Journey”
Read morePublished December 29, 2022 by NORD
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 …
Continue reading “A Husband’s View on How Motivated Moms Have a Hidden Extra Gear”
Read morePublished December 1, 2022 by NORD
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 …
Continue reading “Jan’s Story of Hope”
Read morePublished September 30, 2022 by NORD
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 …
Continue reading “Honoring Steven Matthews This Rare Cancer Day”
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