Published 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 morePublished July 1, 2022 by NORD
This story is about me, my diagnosis with a rare disease known as chorea-acanthocytosis and my experience of undergoing deep brain stimulation (DBS). The onset of the disease was in …
Continue reading “Christina’s Lease on Life”
Read morePublished June 24, 2022 by NORD
I am a rare disease patient who has lived with reflex sympathy dystrophy syndrome (RDS) and complex regional pain syndrome (CRPS) since 2007. In 2013, I was diagnosed with Ehlers-Danlos …
Continue reading “Giving Back to the Community: Suzy’s Rare Journey”
Read morePublished June 10, 2022 by NORD
I am 17 years old and a high school junior with hEDS (hypermobile Ehlers-Danlos syndrome). I should be attending a performing arts high school for musical theatre, but that’s not …
Continue reading “Living Stronger: Jessica’s Rare Journey”
Read morePublished May 27, 2022 by NORD
Imagine being a healthy 30-year-old waking up one day to find yourself stumbling, fatigued, tripping and unable to walk. Following two trips to the emergency room, you are told to …
Continue reading “Raymond’s Journey to a New Normal”
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