Scroll
To Top

September 30, 2020

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

Voices of Rare Cancer: Courtney’s Story

Posted at September 9, 2020 03:00 pm by Laura Mullen

#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 cancer that strikes teens and… Read More

September 25, 2020

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

Voices of Rare Cancer: Jan’s Story

Posted at September 9, 2020 08:43 am by Laura Mullen

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… Read More

September 22, 2020

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

US Senator Richard Blumenthal (D-CT) releases statement of support regarding Rare Cancer Day

Posted at September 9, 2020 01:21 pm by Laura Mullen

US Senator Richard Blumenthal (D-CT) recently commented on Rare Cancer Day, coming up on September 30:

“On Rare Cancer Day, I’m proud to stand with the National Organization for Rare Disorders to raise awareness of rare – and often deadly – cancers and to keep up the fight for cures. With robust federal investment, we can and will find cures… Read More

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