Rare Disease News

2020 Living Rare, Living Stronger NORD Patient and Family Forum Location Announced

Published September 25, 2019 by NORD

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NORD President and CEO Peter L. Saltonstall has some breaking news to share on the city we are taking the Living Rare, Living Stronger: NORD Patient and Family Forum to …

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FDA Acting Commissioner to Deliver NORD Rare Summit Keynote

Published August 14, 2019 by NORD

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We’re delighted to announce that Acting FDA Commissioner, Norman E. “Ned” Sharpless will deliver the keynote address at this year’s Rare Diseases & Orphan Products Breakthrough Summit. Sharpless, a physician and scientist, became …

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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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Registration Open for 2020 NORD Rare Summit

Published July 2, 2019 by NORD

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The time is now…register today!

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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Become a rare disease mythbuster during NORD’s Living Rare, Living Stronger Patient & Family Forum

Published April 18, 2019 by NORD

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The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives …

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Living Rare, Living Stronger full agenda with speakers now available

Published April 9, 2019 by NORD

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The 2019 Living Rare, Living Stronger NORD Patient and Family Forum promises to be an unforgettable weekend for patients, families, medical professionals and students. Download the agenda now and register by April 26 to …

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NORD Announces Honorees for 2019 Rare Impact Awards

Published March 12, 2019 by NORD

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Washington, DC, March 12, 2019—The National Organization for Rare Disorders (NORD) today announced the individuals, organizations and industry innovators who will be honored for their outstanding work in support of …

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Rare Disease Day 2019 Notes and Successes

Published March 6, 2019 by NORD

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Your stripes were shown! See how the rare disease community worked together to make Rare Disease Day 2019 reach the world at large!