Published 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”
Read morePublished September 28, 2022 by NORD
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 …
Continue reading “Rare Cancer Day 2022 Showcases Critical Community Awareness and Advocacy”
Read morePublished September 16, 2022 by NORD
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 …
Continue reading “Unanswered Questions: Leah’s Rare Cancer Story”
Read morePublished September 15, 2022 by NORD
Introducing August My name is August Rocha, and I am an adopted, Chinese-American, transgender TikTok content creator living with Behçet’s disease. While I’ve been symptomatic all my life, I wasn’t …
Continue reading “Introducing August: August’s Behçet’s Journey”
Read morePublished September 8, 2022 by NORD
For the first time in history, the Galactosemia community came together for a historic meeting to share their experiences with the disease and treatments – and hopes for the future …
Read morePublished August 30, 2022 by NORD
Annie Achee is the President and Community Education/Research Liaison of the National Leiomyosarcoma Foundation (NLMSF). Leiomyosarcoma is a rare sarcoma (cancer) that originates in smooth tissue (including fat, muscle, nerves, …
Continue reading “Head of the Herd: Annie Achee, National Leiomyosarcoma Foundation (NLMSF)”
Read morePublished July 29, 2022 by NORD
I’m Rebekah Britto, Mrs. Massachusetts Petite 2022, and I have both Chiari malformation and Ehlers-Danlos syndrome (EDS). My rare disease journey began in 2013, when I started struggling with symptoms …
Continue reading “Rebekah’s Rare Story: How Mrs. Massachusetts Petite Spreads Hope & Awareness”
Read more
By continuing to use this website, you agree to the Terms of Service & Privacy Policy