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Patient Stories

Quality of Life and Butterfly Wishes

By Jill L. Pollander, RN, MSNDirector of Patient Services, NORD 

 I first met the Juneja family several months ago. It was an amazing telephone conference call… Read More

Voices of Rare Cancer: Courtney’s Story

#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… Read More

Voices of Rare Cancer: Jan’s Story

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… Read More

A Newborn Screening Reflection: Sarah’s Story

September is Newborn Screening Awareness Month, and I’d like to share our family’s experience with it, and why we think every parent should know more about this incredible test, that looks for dozens of… Read More

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

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… Read More