Rare Disease News

Voices of Rare Cancer: Courtney’s Story

Published September 30, 2020 by NORD

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#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, …

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TODAY IS RARE CANCER DAY! Voices of Rare Cancer: Lisa’s Story

Published September 30, 2020 by NORD

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In this week’s Voices of Rare Cancer feature, Lisa shares her experience with cholangiocarcinoma.

Voices of Rare Cancer: Jan’s Story

Published September 25, 2020 by NORD

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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 …

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

Published September 22, 2020 by NORD

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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 …

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Voices of Rare Cancer: Emily’s Story

Published September 18, 2020 by NORD

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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 …

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Voices of Rare Cancer: Jeremy’s Story

Published September 11, 2020 by NORD

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In this week’s Voices of Rare Cancer feature, Jeremy shares his experience with pseudomyxoma peritonei (PMP), and the role genomic testing has played in his treatment.

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

Published September 4, 2020 by NORD

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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 …

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Voices of Rare Cancer: Lauren’s Story

Published October 1, 2019 by NORD

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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 …

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Voices of Rare Cancer: Kristin’s Story

Published August 30, 2019 by NORD

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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 …

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