Rare Disease News

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!

Rare Disease Day 2019 Notes and Successes

Published March 6, 2019 by NORD

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Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!

Astellas Recognizes Rare Disease Day

Published February 28, 2019 by NORD

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Rare Disease Day

Astellas is proud to support Rare Disease Day and is actively committed to raising awareness about rare diseases and their impact on patients, their families and caregivers. Astellas’ dedication to patients …

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