Published 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”
Read morePublished May 13, 2022 by NORD
I am a parent to a daughter with genetic disorder 22q11.2 deletion syndrome (commonly known as DiGeorge syndrome). She was born on July 1, 2021 and diagnosed on July 23 …
Continue reading “Summerly’s Rare Journey”
Read morePublished May 11, 2022 by NORD
Post-Transplant Lymphoproliferative Disorder (PTLD) is a rare cancer related to organ and stem cell transplants, as well as Epstein bar disease. There is no nonprofit organization dedicated to this community …
Continue reading “NORD Hosts the Largest Gathering of a Rare, Post-Transplant Cancer in History”
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