Rare Disease News

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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Head of the Herd: Bonnie Royster, CdLS Foundation

Published February 14, 2020 by NORD

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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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Head of the Herd: Mike Morris, TANGO2 Research Foundation

Published January 31, 2020 by NORD

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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… …

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NORD State of the States Report Shows Key Policy Improvements Were Achieved by States in 2019, But More Progress Is Needed to Support Americans Living with Rare Diseases

Published January 30, 2020 by NORD

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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 …

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Head of the Herd: Leah Schust Myers, FamilieSCN2A Foundation

Published January 17, 2020 by NORD

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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 …

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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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What Questions Would You Ask About Gene Editing?

Published December 2, 2019 by NORD

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Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and …

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NORD’s Rare Action Network Mobilized for a Successful Hill Day

Published October 29, 2019 by NORD

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On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, …

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