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January 26, 2021

TOPIC: Patient Stories, Rare Disease Day

Bradley’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 09:26 am by Valaree DonFrancesco

My son Bradley was diagnosed with infantile myofibromatosis when he was four months old. We noticed he had a large mass on his forearm and immediately called the pediatrician. They sent us to radiology to have an ultrasound done and before we knew it, we were headed to the medical center in Houston, Texas to meet an oncologist…. Read More

January 25, 2021

TOPIC: Patient Stories, Rare Disease Day

Olivia’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 09:26 am by Valaree DonFrancesco

My oldest daughter, Olivia, was recently diagnosed with Barakat syndrome (Gata 3 or HDR syndrome). Though she is eleven now, we have been battling the kidney disease part since birth and hearing loss since age five. As of now, she does not exhibit any hypoparathyroidism symptoms yet. The biggest stress on our… Read More

January 24, 2021

TOPIC: Patient Stories, Rare Disease Day

Tristan’s Story in Honor of Rare Disease Day

Posted at January 1, 2021 05:26 pm by Valaree DonFrancesco

You are featured in the 2021 Rare Disease Day international campaign as a patient “hero” from the United States. Why is Rare Disease Day important to you?

I‘m so honored to be a part of this amazing campaign. Rare Disease Day is important to me because it’s a day when a spotlight is focused on… Read More

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 Valaree DonFrancesco

#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