Rare Disease News

Today is #RareCancerDay!

Published October 1, 2019 by NORD

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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 …

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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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Get Involved

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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Catch Living Rare Forum Plenaries and The Rare Impact Awards on Facebook Live!

Published June 17, 2019 by NORD

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NORD’s Living Rare, Living Stronger Patient & Family Forum is coming us this weekend on June 21-23 in Houston, TX. For those not joining us in-person, please join us online! …

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Exciting Rare Impact Awards Announcements

Published May 21, 2019 by NORD

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This year’s Rare Impact Awards are going to be spectacular! From star power to the heroes of the rare disease community, it is going to be a night to remember. Every …

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The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Published May 20, 2019 by NORD

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Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for …

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