Published January 28, 2021 by NORD
Washington, DC, January 28, 2021— Even with the world acutely aware of public health matters in light of the COVID-19 pandemic, there are millions in the United States and around the globe …
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 March 13, 2020 by NORD
In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, …
Continue reading “Rare Disease Day 2020 Advocacy Events Recap”
Read morePublished March 11, 2020 by NORD
If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of …
Read morePublished February 29, 2020 by NORD
I suffer from neuromyelitis optica, or NMO disease (sister of MS, also known as Devic syndrome) and chronic pain. I experienced my first attack in the summer and now am …
Continue reading “Savannah’s Story in honor of Rare Disease Day”
Read morePublished February 29, 2020 by NORD
I was diagnosed with afibrinogenemia when I was just one day old. The day I was born my heel sticks would not stop bleeding, which immediately had the delivering doctor …
Continue reading “Bridget’s Story in honor of Rare Disease Day”
Read morePublished February 29, 2020 by NORD
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 …
Continue reading “Ashlee’s Story in honor of Rare Disease Day”
Read morePublished February 27, 2020 by NORD
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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