Published September 24, 2021 by NORD
One month after his 35th birthday, my father, Kenneth, died of leiomyosarcoma (LMS). The journey was quick. He coughed up blood and it brought him into surgery. Massachusetts General Hospital diagnosed him, and he died in another hospital closer to my hometown five months …
Continue reading “Still Rare After 50 Years: Andrea’s Rare Cancer Story”
Read morePublished September 17, 2021 by NORD
Shayna had advanced metastatic chondrosarcoma, and her disease progression defied many expert opinions and expectations. In 2015, Shayna was misdiagnosed with scoliosis, and nine months elapsed before she was accurately diagnosed. She was prescribed physical therapy and exercises, which were …
Continue reading “A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story”
Read morePublished September 10, 2021 by NORD
At the age of 14, I was diagnosed with a rare form of GI tract cancer called gastrointestinal stromal tumors (GIST). Living with a rare disease is incredibly complicated, and you must learn how to be your own …
Continue reading “Sharing Makayla’s Voice for Rare Cancer Day”
Read morePublished September 3, 2021 by NORD
I have been a healthy person my whole life. I never drank alcohol or smoked, and I had a good diet. In 2004, I began to have some questionable numbers on blood work, but my primary doctor could never really tell what was going on. My …
Continue reading “Martin’s Fight Against Waldenstrom Macroglobulnemia”
Read morePublished August 27, 2021 by NORD
In 2001, I was diagnosed with ocular melanoma. What makes ocular melanoma rare is that only 2,500 people are diagnosed with it each year. Following my diagnosis in October of 2001, I went through numerous tests at Sylvester Cancer Center. In November, I was admitted into the hospital where …
Continue reading “A Life Saving Reminder – Loren’s Rare Cancer Journey”
Read morePublished July 16, 2021 by NORD
Last month, the National Organization for Rare Disorders (NORD) hosted their second virtual Living Rare, Living Stronger NORD Patient & Family Forum. From June 25-28, enthusiastic attendees from around the …
Continue reading “Looking Back at an Unforgettable 2021 Living Rare, Living Stronger Forum”
Read morePublished June 21, 2021 by NORD
The National Organization for Rare Disorders (NORD), along with The ALS Association, the Cystic Fibrosis Foundation, and the Muscular Dystrophy Association recently partnered again to host a virtual conversation on COVID-19 vaccines and safety. The event featured leaders from the US Food and Drug …
Read morePublished June 11, 2021 by NORD
Ray Stevens, rare disease researcher, advocate, and adventure seeker, has concluded his Himalayas and Mount Everest trek to rare awareness for NORD and our community. Ray made it just past 22,000 feet of elevation, which marks camp two of four before …
Continue reading “Ray Stevens’ Rare Disease Reflections from 22,000 Feet”
Read morePublished May 6, 2021 by NORD
Bethesda, MD, May 6, 2021—The Aplastic Anemia and MDS International Foundation (AAMDSIF) and the National Organization for Rare Disorders (NORD)® today launched the largest-ever study to research Paroxysmal Nocturnal Hemoglobinuria …
Read morePublished April 29, 2021 by NORD
The road to a correct rare disease diagnosis is far too long. This Undiagnosed Day, please share this infographic with your community and if you, or someone you know, is …
Continue reading “New Patient Journey Infographic Gives A Glimpse Into The Diagnostic Odyssey”
Read more
Every day matters for patients, researchers, and families who rely on NORD's trusted information.
We can’t keep these resources free and growing without your help.
Please donate today — and power the future of rare disease progress.
Whether you’re a patient, researcher, student, or advocate — we’re here for you.
If you’ve found NORD’s resources helpful, please consider donating.
Your support keeps this information free, updated, and available for everyone who needs it.