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September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Loneliness, Connection and Mesothelioma: Tamron’s Rare Disease Story

Posted at September 9, 2021 09:30 am by Rohan Narayanan

I was diagnosed with peritoneal mesothelioma in 2007 as a 21-year-old new mother. When the doctor told me I had peritoneal mesothelioma, I didn’t know what it was. I was overwhelmed with shock and confusion with so many questions about this rare disease and how little information seemed available. Mostly, I felt alone. Feeling alone when faced with a diagnosis of a rare disease… Read More

September 30, 2021

TOPIC: Patients & Members, Patient Stories, Voices of Rare Cancer

Timing and Access: Katherine’s Rare Cancer Story

Posted at September 9, 2021 08:30 am by Rohan Narayanan

I was a healthy 27-year-old with no underlying risk factors when I was diagnosed with appendix cancer. 

One evening, I started cramping in my abdomen. I thought nothing of it until the intensity increased and I could barely sit upright or walk. I called my primary care provider and she recommended I go to the emergency room, as it could be appendicitis. I was nervous to go,… Read More

September 30, 2021

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

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

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