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October 15, 2021

TOPIC: Patients & Members, Patient Stories

From a Horse to a Zebra: Dana’s Rare Disease Story

Posted at October 10, 2021 09:06 am by Rohan Narayanan

I was five years old, excitedly cheering on my mother at her softball game at City Park ball fields in Fort Collins, Colorado. She hit the ball and I jumped and cheered with the others in the bleachers. Then, my life changed. I slipped and fell through the bleachers. Climbing back up, lifting my pant leg, the tear… Read More

October 5, 2021

TOPIC: Patients & Members, Patient Stories

Saida’s Story of Strength

Posted at October 10, 2021 09:06 am by Rohan Narayanan

I have been diagnosed with a rare chronic genetic disease called partial trisomy 8Q duplication syndrome since birth and I was also recently diagnosed with hidradenitis suppurativa (HS). My life has been full of challenges, and I want to bring awareness to what I go through so that anyone else struggling can find comfort and support in my… Read More

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: Featured News, Patients & 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