Rare Disease News

NORD Announces Sing Me a Story Raffle for Upcoming Living Rare, Living Stronger Patient and Family Forum

Published March 3, 2020 by NORD

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NORD is proud to welcome Sing Me a Story to the upcoming 2020 Living Rare, Living Stronger Forum in Cleveland, Ohio, where the ideas of children living with rare diseases will be turned into song! This opportunity …

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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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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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Mark Your Calendars – October 1 is Rare Cancer Day!

Published August 21, 2019 by NORD

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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 …

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Upcoming Externally-Led Patient Focused Drug Development Meeting for PKD Community

Published July 11, 2019 by NORD

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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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Featured Student: Alexander Pham

Published July 8, 2019 by NORD

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NORD’s Educational Initiatives team spoke with Alexander Pham, a Massachusetts College of Pharmacy and Health Sciences student and NORD Students for Rare Chapter Leader. In this interview, Alexander talks about his …

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Registration Open for 2020 NORD Rare Summit

Published July 2, 2019 by NORD

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The time is now…register today!

Help for rare disease patients impacted by Hurricane Dorian

Published July 1, 2019 by NORD

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NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …

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NORD’s 2019 Living Rare, Living Stronger Weekend Highlights

Published June 27, 2019 by NORD

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We would like to extend our sincerest thanks to all those who joined us during the Living Rare, Living Stronger NORD Patient & Family Forum, June 21-23 in Houston. Over …

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