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Rare Cancer Day 2021

Rare Cancer Day is an annual awareness day devoted to shining a light on rare cancers and the issues people living with them face. Spearheaded by the NORD Rare Cancer Coalition, which is composed of 27 rare cancer-specific member organizations, 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.


Rare Cancer Day Social Media Assets

Voices of Rare Cancer Patient Stories

Voices of Rare Cancer: Courtney’s Story

#RareCancerDay brings attention to the fact that without research funding, the only option for patients is to endure blanket therapy regimes that are designed for other types of cancers and, as a result, patients typically do not have high survival rates. One of these types of rare cancers is fibrolamellar carcinoma (FLC), an aggressive liver Read more > ...Read more >

Voices of Rare Cancer: Jan’s Story

My name is Jan and in January 2018 life changed for my husband and me as we knew it. I was on the operating room table to have gastric sleeve surgery. I had six months of intense and detailed medical tests prior to the surgery. Imagine my shock when I woke up from surgery (the first time I had  major surgery Read more > ...Read more >

Voices of Rare Cancer: Emily’s Story

An Unlikely Warrior A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one picked for sports. I was also usually one of the kids that got picked on first, as I most likely to cry. I was labeled Read more > ...Read more >

Voices of Rare Cancer: Lauren’s Story

My name is Lauren, I’m 23 years old and I live in Boston, MA. Two years ago, before my senior year at college, I was given the news that nobody ever wants to hear: I was told that I had a rare form of appendix cancer. Cancers and tumors of the appendix are extremely rare, Read more > ...Read more >

Voices of Rare Cancer: Kristin’s Story

This story is my rare cancer syndrome journey. I have a rare genetic illness called PTEN hamartoma tumor syndrome, which was diagnosed in 2011 after I was diagnosed with thyroid cancer in 2009. I am also a three-time cancer survivor, surviving two melanoma surgeries. I have undergone two preventative surgeries and get colon and kidney Read more > ...Read more >

Thank you to our NORD Rare Cancer Day sponsor Foundation Medicine!

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