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September 18, 2020

TOPIC: Featured News, Patients & Members, Advocacy, Voices of Rare Cancer 2020

Voices of Rare Cancer: Emily’s Story

Posted at September 9, 2020 08:05 am by Laura Mullen

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 “sensitive” as a child. I… Read More

September 4, 2020

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020

#RareCancerDay is September 30! NORD will share facts, information and patient stories throughout the month.

Posted at September 9, 2020 08:44 am by Laura Mullen

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… Read More

October 1, 2019

TOPIC: Featured News, Patients & Members, Patient Stories, Voices of Rare Cancer 2020

Voices of Rare Cancer: Lauren’s Story

Posted at October 10, 2019 10:34 am by Valaree DonFrancesco

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, once thought to be… Read More

August 30, 2019

TOPIC: Featured News, Patient Stories, Voices of Rare Cancer 2020

Voices of Rare Cancer: Kristin’s Story

Posted at August 8, 2019 12:54 pm by Laura Mullen

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 screening annually.

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