Published 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 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”
Read morePublished September 24, 2020 by NORD
At the Head of the Herd is… Susan Thornton, CEO, Cutaneous Lymphoma Foundation Susan advocates for those living with… Cutaneous lymphoma Susan is located in… Philadelphia, PA. You can connect …
Continue reading “Head of the Herd: Susan Thornton, CEO, Cutaneous Lymphoma Foundation”
Read morePublished September 22, 2020 by NORD
US Senator Richard Blumenthal (D-CT) recently commented on Rare Cancer Day, coming up on September 30: “On Rare Cancer Day, I’m proud to stand with the National Organization for Rare …
Read morePublished September 18, 2020 by NORD
An Unlikely Warrior A warrior has been defined as a brave or experienced soldier or fighter. Hardly seems like me. I was small growing up, and always the last one …
Continue reading “Voices of Rare Cancer: Emily’s Story”
Read morePublished September 17, 2020 by NORD
Head of the Herd Spotlight, Amber Freed SLC6A1 Connect At the Head of the Herd is… Amber Freed, Founder and CEO, SLC6A1 Connect. Amber advocates for… children living with the …
Continue reading “Head of the Herd: Amber Freed, Founder and CEO, SLC6A1 Connect”
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