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August 18, 2016

TOPIC: Events, Get Involved, Industry, Medical, Patients & Members

Key Dates Approaching for NORD Summit

Posted at August 8, 2016 02:50 pm by Christina Jensen
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Advanced Pricing Deadline is Friday, August 26

Register for NORD’s annual Rare Diseases & Orphan Products Breakthrough Summit (Oct. 17-18, Arlington, VA) by August 26 and save up to $400. More specific pricing information for the summit can be found here.

Poster Abstracts are due Friday, August 19

Calling all researchers –  the theme for the 2016 poster session at… Read More

May 23, 2016

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Patients & Members, Research

NORD Summit 2016

Posted at May 5, 2016 11:32 am by Christina Jensen
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RareSummit2016_live

Save the date for the 2016 NORD Summit! Attendees can look forward to:

  • Timely Topics
    • Sessions on genetic innovation, collaborations across borders, reimbursement, pricing and access, off-label concerns, driving progress through policy and more.
  • Inspiring Perspectives
    • Hear from manufacturers, patients, advocates, legislative and regulatory leaders, academics, researchers and more as they trail-blaze the road ahead… Read More

May 12, 2016

TOPIC: Advocacy, Events, Industry, Medical, Patients & Members, Press Releases, Research

NORD to Hold Rare Diseases Roundtable

Posted at May 5, 2016 05:06 pm by Jennifer Huron
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NORD_RareImpactAwards2016_Program_Page6The National Organization for Rare Disorders (NORD) will host a roundtable on May 17 with a wide range of stakeholders who are creating positive change across the rare disease community.

The roundtable will be held at the Warner Theatre in Washington, D.C., where NORD’s 2016 Rare Impact Awards are… Read More

April 28, 2016

TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research

NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

Posted at April 4, 2016 12:43 pm by Jennifer Huron
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NORD with Trio Health partnership

WASHINGTON, D.C./BOSTON ― April 28, 2016 ―The National Organization for Rare Disorders (NORD), the country’s leading voice for the rare disease patient community, is collaborating with Trio Health to leverage its innovative platform to monitor real-world patients. This unique insight will allow physicians, drug manufacturers,… Read More

April 7, 2016

TOPIC: Events, Featured News, Get Involved, Industry

Introducing the 2016 Rare Disease Day® Highlights Video

Posted at April 4, 2016 10:07 am by Christina Jensen
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Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day®.  This is the one day that everyone comes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more around the world. NORD is proud to be the U.S…. Read More