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October 13, 2020

TOPIC: Featured News, Patients & Members, Patient Stories

Quality of Life and Butterfly Wishes

Posted at October 10, 2020 08:40 am by Jill Pollander

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 (life and work were remote by then)one that was both heartbreaking and heartwarmingI was and am inspired by this familyRead More

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 15, 2020

TOPIC: Featured News, Advocacy, Patient Stories, Newborn Screening

A Newborn Screening Reflection: Sarah’s Story

Posted at September 9, 2020 08:58 am by Laura Mullen

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 genetic disorders in babies that are not so easily apparent at birth.

My husband Chris and I waited to have kids, enjoying the early years of… Read More

September 4, 2020

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

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

Posted at September 9, 2020 08:44 am by Laura Mullen

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 of 27 rare cancer-specific member organizations, Rare Cancer Day is observed on September 30 to highlight the challenges patients face and to unify individuals living… Read More