Published 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? …
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 …
Continue reading “Head of the Herd: Bonnie Royster, CdLS Foundation”
Read morePublished January 31, 2020 by NORD
At the head of the herd is… Mike Morris, Co-Founder & President, TANGO2 Research Foundation Get in touch with Mike on… Facebook and Twitter Mike advocates for those living with… …
Continue reading “Head of the Herd: Mike Morris, TANGO2 Research Foundation”
Read morePublished January 30, 2020 by NORD
Washington, DC, January 30, 2020—According to the 5th Edition of the “State of the States Report,” released today by the National Organization for Rare Disorders (NORD®) and its Rare Action …
Read morePublished January 17, 2020 by NORD
At the head of the herd is… Leah Schust Myers, Founder, Executive Director and Research Committee Chair, FamilieSCN2A Foundation Leah advocates for those living with… SCN2A Disorders Leah is located …
Continue reading “Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation”
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