Published March 6, 2020 by NORD
At the head of the herd is… Akiva Zablocki, President, The Hyper IgM Foundation Akiva most frequently checks his… https://www.facebook.com/Akiva Akiva advocates for those living with… hyper IgM syndrome Akiva …
Continue reading “Head of the Herd: Akiva Zablocki, The Hyper IgM Foundation”
Read morePublished March 5, 2020 by NORD
As information on the coronavirus, COVID-19, dominates the news, we want to share with you guidance from the Centers for Disease Control and Prevention (CDC).
Read morePublished March 3, 2020 by NORD
NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity …
Read morePublished February 26, 2020 by NORD
This year, NORD has developed a brief video for Rare Disease Day featuring rare patients, caregivers and supporters sharing their thoughts on the importance of the day and relaying the …
Continue reading “NORD Debuts Rare Disease Day 2020 Video”
Read morePublished February 25, 2020 by NORD
Does anyone ever think that they may have a rare disease? Well, I for one definitely didn’t. Here I was, having my annual check-up with my very astute dermatologist, who …
Continue reading “Why Rare Disease Day Is Important to Me, by Chris Madden”
Read morePublished February 14, 2020 by NORD
At the head of the herd is… Bonnie Royster, Executive Director, Cornelia de Lange Syndrome (CdLS) Foundation Bonnie most frequently checks her… Facebook Bonnie advocates for those living with… Cornelia …
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Read morePublished February 4, 2020 by NORD
My daughter Gia was diagnosed at birth with the rare disease sickle cell. Gia has had 5 bouts with pneumonia, many stays in ICU, and nine blood transfusions. Sickle cell …
Continue reading “Gina and Gia’s Story in Honor of Rare Disease Day”
Read morePublished February 4, 2020 by NORD
This story is about our son, Wyatt, who was diagnosed with Coats plus syndrome at the age of ten. The story starts with my pregnancy. At 26 weeks, during a …
Continue reading “Wyatt’s Story in Honor of Rare Disease Day”
Read morePublished February 4, 2020 by NORD
This is my story of my own journey as a pyknodysostosis (PKND) patient. It began way back as any other PKNDs, but I started to experience the impact when I …
Continue reading “Zuhriah’s Story in Honor of Rare Disease Day”
Read morePublished February 4, 2020 by NORD
This story is about my husband, Tucker. In 2004, we began to notice that he wasn’t able to play guitar like he used to, as well as that he was …
Continue reading “Tucker’s Story in Honor of Rare Disease Day”
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