Published 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… …
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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 …
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Read morePublished January 16, 2020 by NORD
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 …
Continue reading “NORD Issues a Rare Decree: Show Your Stripes™ for Rare Disease Day®!”
Read morePublished December 2, 2019 by NORD
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 …
Continue reading “What Questions Would You Ask About Gene Editing?”
Read morePublished October 29, 2019 by NORD
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, …
Continue reading “NORD’s Rare Action Network Mobilized for a Successful Hill Day”
Read morePublished October 1, 2019 by NORD
The big day is here – Rare Cancer Day! Launched by the National Organization for Rare DisordersⓇ (NORD) and the NORD Rare Cancer Coalition®, the goal of #RareCancerDay is to raise …
Continue reading “Today is #RareCancerDay!”
Read morePublished August 21, 2019 by NORD
Washington, DC, August 29, 2019–The National Organization for Rare DisordersⓇ (NORD) has announced a day devoted to raising awareness about rare cancers. Spearheaded by the NORD Rare Cancer Coalition®, which …
Continue reading “Mark Your Calendars – October 1 is Rare Cancer Day!”
Read morePublished July 11, 2019 by NORD
NORD and the Foundation for Rare Blood Diseases (SZB) invite you to register for an externally-led Patient Focused Drug Development (EL-PFDD) meeting on Pyruvate Kinase deficiency (PKD), taking place Friday, …
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