Rare Disease News

Ashlee’s Story in honor of Rare Disease Day

Published February 29, 2020 by NORD

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I was diagnosed with primary immunodeficiency when I was four years old. With primary immunodeficiency, the assumption is that “it’s just an infection” or that it’s normal because “kids get …

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Tik Tok Influencer Mark Anastasio Challenges Connecticut Students to Stripe Out Their Schools

Published February 27, 2020 by NORD

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Dance, lip-sync and comedy video creator Mark Anastasio spoke in a somewhat different tone in a recent Tik Tok video for his 6.3 million followers. The content of the video? …

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NORD Debuts Rare Disease Day 2020 Video

Published February 26, 2020 by NORD

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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 …

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Why Rare Disease Day Is Important to Me, by Chris Madden

Published February 25, 2020 by NORD

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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 …

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Gina and Gia’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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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 …

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Wyatt’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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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 …

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Zuhriah’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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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 …

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Tucker’s Story in Honor of Rare Disease Day

Published February 4, 2020 by NORD

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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 …

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NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!

Published January 16, 2020 by NORD

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Washington, DC, January 16, 2020–The National Organization for Rare Disorders (NORD®), the leading independent nonprofit organization representing over 25 million Americans living with rare diseases, is issuing a Rare Disease …

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Join NORD on Rare Disease Day

Published January 13, 2020 by NORD

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Rare Disease Day

Your mission, should you choose to accept, is to register now!

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