Rare Cancer Day - NORD (National Organization for Rare Disorders)

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

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 Read more > ...Read more >

Timing and Access: Katherine’s Rare Cancer Story

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 Read more > ...Read more >

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

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 Read more > ...Read more >

Rare Cancer Day 2021 Brings Together Rare Disease Community and Advocates

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. NORD’s Rare Cancer Coalition, composed Read more > ...Read more >

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

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 Read more > ...Read more >

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

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 Read more > ...Read more >

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

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 Read more > ...Read more >

Sharing Makayla’s Voice for Rare Cancer Day

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 best advocate. Someone else may have the same disease, but everyone’s experience is going to be drastically different. Initially, there was not a lot of knowledge of GIST. Read more > ...Read more >

Martin’s Fight Against Waldenstrom Macroglobulnemia

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 knees shook when I was referred to a hematologist and oncologist in 2010. I was given a diagnosis of Monoclonal gammopathy of undetermined significance (MGUS). I was told that I had an indolent lymphoma that may or may not develop, and Read more > ...Read more >

A Life Saving Reminder – Loren’s Rare Cancer Journey

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 they implanted a metal plate into my left eye with 20 seeds of radiation, which was removed after a week. The doctor continued to see me every six Read more > ...Read more >

Rare Cancer Day 2021

Resources

2021 Rare Cancer Day Social Media Toolkit

2021 Rare Cancer Day Infographic

2021 Rare Cancer Day Social Media Posts Assets

Rare Cancer Day Social Media Assets

Voices of Rare Cancer Patient Stories