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Archives for: October 1st, 2019

Today is #RareCancerDay!

Written by Laura Mullen on October 1, 2019

The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition, the goal of #RareCancerDay is to raise critical awareness of rare cancers and the need for greater research funding and patient support.

“I’ve never heard of that!” is… Read More

Rare Cancer Day 2019

Written by Lisa Sencen on October 1, 2019

NORD’s Rare Cancer Coalition is the only united group of rare cancer advocacy organizations in the United States. The objective of the coalition is to form a close-knit, multi-stakeholder community to work collaboratively on issues that the greater rare cancer community faces.

In 2019, the coalition will host the first Rare… Read More

Voices of Rare Cancer: Nicole’s story

Written by Laura Mullen on September 27, 2019

My name is Nicole and I was diagnosed with Stage 3 sarcoma cancer in July 2017 at the age of 27. It was bizarre being diagnosed with cancer in the first place, but to be diagnosed with a cancer I had never heard of was even more odd…. Read More

Voices of Rare Cancer: Paul’s Story

Written by Laura Mullen on September 13, 2019

Looking back, my symptoms started as early as age 10. I lived in a heightened state of anxiety, and every day stresses seemed to become gradually more unmanageable. I didn’t know what was normal, so I just figured that was what growing up felt like. Over the next… Read More

Voices of Rare Cancer: Kristin’s Story

Written by Laura Mullen on August 30, 2019

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… Read More