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Patient Stories

Voices of Rare Cancer: Aidan’s Story

My name is Aidan, I am 19 years old and I have NF1. I have a large tumor on my neck, which goes up into my brain and down to my lungs… 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:… Read More

Today is #RareCancerDay!

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… Read More

Amish Community Testimony

Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20.

Written By Debbie Drell, Director of Membership, NORD

According to the NIH, more than 500 affected families have… Read More

Voices of Rare Cancer: Nicole’s story

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,… Read More