Rare Disease News

Rare Disease Day 2020 Advocacy Events Recap

Published March 13, 2020 by NORD

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In 2009, NORD was invited to join the official Rare Disease Day campaign, led internationally by EURODIS. Since then, NORD has been the official US sponsor of Rare Disease Day, …

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Rare Disease Day 2020 and the Mission I Choose to Accept, by Debbie Drell, Director of Membership for NORD

Published March 11, 2020 by NORD

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If you or someone you love is diagnosed with a rare disease, you might find yourself on a very quick learning curve about the disease (or about the lack of …

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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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NORD Introduces This Year’s Rare Disease-Fighting Super Group: The 2020 Rare Impact Award Honorees!

Published February 11, 2020 by NORD

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Washington, DC, February 11, 2020—The National Organization for Rare Disorders (NORD®) has announced this year’s roster of rare disease change-makers, the 2020 Rare Impact Award honorees. These exceptional individuals, organizations …

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Reflections of a First Time NORD Summit Attendee: Matthew’s Story

Published November 12, 2019 by NORD

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I attended the NORD 2019 Summit in Washington, DC a few weeks ago. It was my first chance to attend this conference organized by the National Organization for Rare Disorders …

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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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2019 NORD Summit Breaks Records with Largest Attendance Ever!

Published October 23, 2019 by NORD

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Health and Human Services Secretary Alex Azar speaking at the NORD Summit on October 22, 2019 Washington, DC, October 23, 2019–Earlier this week, the National Organization for Rare DisordersⓇ …

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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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Amish Community Testimony

Published September 29, 2019 by NORD

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Read at Pyruvate Kinase Deficiency (PKD) Externally-Led Patient Focused Drug Development Meeting (PFDD) Meeting on Friday, September 20. Written By Debbie Drell, Director of Membership, NORD According to the NIH, …

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BioNews Service Previews 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit

Published September 27, 2019 by NORD

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On September 26, BioNews Service published an extensive article written by reporter Larry Luxner, previewing the upcoming NORD Rare Diseases & Orphan Products Breakthrough Summit, which will be taking place …

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