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May 23, 2016

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

NORD Summit 2016

Posted at May 5, 2016 11:32 am by Lisa Sencen

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

NORD to Hold Rare Diseases Roundtable

Posted at May 5, 2016 05:06 pm by Jennifer Huron

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

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

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: Featured News, Industry, Events, Get Involved

Introducing the 2016 Rare Disease Day® Highlights Video

Posted at April 4, 2016 10:07 am by Lisa Sencen

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

March 1, 2016

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

Neurology Reviews Publishes The Rare Neurological Diseaes Special Report

Posted at March 3, 2016 04:51 pm by Lisa Sencen

The Rare Neurological Disease Special Report™ was published on Rare Disease Day® in collaboration with the National Organization for Rare Disorders (NORD) as a supplement to the February 2016 issue of Neurology Reviews® (NR). This Special Report honors Rare Disease Day (February 29th, 2016) and is easily accessible at neurologyreviews.com.

The estimated 7,000 rare diseases, many of which… Read More