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September 30, 2021

TOPIC: Featured News, Members, Patient Stories, Voices of Rare Cancer

Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Posted at September 9, 2021 08:00 am by Maia Craig

Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is no cure. Originally, his primary care physician thought the mass could be a desmoid tumor but once the CT scan and MRI came back as inconclusive, she recommended for… Read More

September 29, 2021

TOPIC: Voices of Rare Cancer, Press Releases

Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

Posted at September 9, 2021 10:46 am by Rohan Narayanan

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 observed on September 30 to highlight the challenges patients face and to unify individuals living with rare cancers for awareness and early diagnosis.Read More

September 28, 2021

TOPIC: Featured News, Medical, Head of the Herd, Voices of Rare Cancer

Head of the Herd: David Arons, National Brain Tumor Society

Posted at September 9, 2021 08:00 am by Maia Craig

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 disease space.

1. How did you get started in the rare disease community?

I was motivated by my father who died of advanced metastatic melanoma when I was… Read More

September 24, 2021

TOPIC: Members, Patient Stories, Voices of Rare Cancer

Still Rare After 50 Years: Andrea’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

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 later. 

As a child, I had no capacity to understand nor grieve his death. At 35, the same age he was when he passed, I began to grieve and I have not stopped. I am 55 now and I realize his… Read More

September 17, 2021

TOPIC: Members, Advocacy, Patient Stories, Voices of Rare Cancer

A Message to Chondrosarcoma Patients: Shayna’s Rare Cancer Story

Posted at September 9, 2021 09:00 am by Rohan Narayanan

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 ineffective in reducing her pain. Early detection is needed in diagnosing chondrosarcoma, and we found a lack of information available about the disease. 

Other false assumptions and misinformation were communicated… Read More