Published February 12, 2021 by NORD
I was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with …
Continue reading “Ashlee’s Story in Honor of Rare Disease Day”
Read morePublished January 26, 2021 by NORD
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 …
Continue reading “Bradley’s Story in Honor of Rare Disease Day”
Read morePublished January 25, 2021 by NORD
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 …
Continue reading “Olivia’s Story in Honor of Rare Disease Day”
Read morePublished January 24, 2021 by NORD
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 …
Continue reading “Tristan’s Story in Honor of Rare Disease Day”
Read morePublished November 13, 2020 by NORD
At the Head of the Herd is… Charlene Son Rigby, President and Cofounder, STXBP1 Foundation Charlene advocates for those affected by… STXBP1 encephalopathy Charlene is located in… San Francisco, CA …
Continue reading “Head of the Herd: Charlene Son Rigby, President and Cofounder, STXBP1 Foundation”
Read morePublished October 13, 2020 by NORD
By Jill L. Pollander, RN, MSN, Director 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 …
Continue reading “Quality of Life and Butterfly Wishes”
Read morePublished October 9, 2020 by NORD
At the Head of the Herd is… Jennifer Canvasser, Founder and Director, Necrotizing Enterocolitis (NEC) Society Jennifer advocates for those affected by… necrotizing enterocolitis (NEC) Jennifer is located in… Davis, …
Read morePublished September 30, 2020 by NORD
#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, …
Continue reading “Voices of Rare Cancer: Courtney’s Story”
Read morePublished September 30, 2020 by NORD
In this week’s Voices of Rare Cancer feature, Lisa shares her experience with cholangiocarcinoma.
Read morePublished September 25, 2020 by NORD
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 …
Continue reading “Voices of Rare Cancer: Jan’s Story”
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