Published January 11, 2022 by NORD
Leading up to #RareDiseaseDay on February 28, NORD is sharing stories from patients and caregivers impacted by rare disease. This week, we are sharing Finn’s congenital muscular dystrophy (CMD) journey …
Continue reading “Rare Disease Day: Finn’s Story”
Read morePublished December 27, 2021 by NORD
I’m as “normal” as anyone else. I look completely “normal” (besides being in an orthopedic brace), I act completely “normal,” and my life is completely “normal”. I have been married for 40 years and have two adult children and three grandchildren. I have worked with my husband in …
Continue reading “Far From “Normal”: Brenda’s Rare Disease Story”
Read morePublished December 6, 2021 by NORD
Mark Laabs is the Founder and Chairman of the Rare Cancer Research Foundation (RCRF). He shares a passion for driving research infrastructure with diversity, equity, and inclusion for rare cancer …
Continue reading “Head of the Herd: Mark Laabs, Rare Cancer Research Foundation (RCRF)”
Read morePublished December 3, 2021 by NORD
Once, I was an intelligent, well-traveled and active African American entrepreneur in my middle 40’s who had opportunities to do wonderful things in the world. My passion was to help disabled people of all ages improve their lives. I was fortunate enough to be an icon as the first woman in technology to educate thousands of individuals …
Continue reading “Dianna’s Story as a Rare Survivor”
Read morePublished October 29, 2021 by NORD
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 …
Continue reading “Five Disorders: Dee’s Rare Story”
Read morePublished October 15, 2021 by NORD
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 …
Continue reading “From a Horse to a Zebra: Dana’s Rare Disease Story”
Read morePublished October 5, 2021 by NORD
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 …
Continue reading “Saida’s Story of Strength”
Read morePublished September 30, 2021 by NORD
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 …
Continue reading “Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story”
Read morePublished September 30, 2021 by NORD
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 …
Continue reading “Timing and Access: Katherine’s Rare Cancer Story”
Read morePublished September 30, 2021 by NORD
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 …
Continue reading “Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story”
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