Published September 29, 2021 by NORD
Washington, DC, September 29, 2021— Tomorrow, the rare disease community will celebrate the third annual Rare Cancer Day. Spearheaded by the National Organization for Rare Disorders (NORD®) Rare Cancer Coalition™, Rare Cancer Day is …
Continue reading “Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates”
Read morePublished September 28, 2021 by NORD
David Arons is the Chief Executive Officer of the National Brain Tumor Society (NBTS). He shares a passion for incorporating diversity, equity, and inclusion within the rare cancer and rare …
Continue reading “Head of the Herd: David Arons, National Brain Tumor Society”
Read morePublished 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 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 February 26, 2021 by NORD
I am the parent of a four-year-old girl named Nola. She was diagnosed with distal 18q deletion at the age of 18 months. Caring for a child with a rare disease affects every aspect …
Continue reading “Jason and Nola’s Story in Honor of Rare Disease Day”
Read morePublished February 26, 2021 by NORD
Our brave beauty’s name is Valencia Bella. Together, her father and I raise her to be strong and courageous. She was born with amniotic band syndrome where the cords were wrapped around her legs …
Continue reading “Valencia Bella’s Story in Honor of Rare Disease Day”
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