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May 27, 2016

TOPIC: Featured News, Medical, Patients & Members

NORD Members Share Great Resources for ER Visits During #RareERChat

Posted by Christina Jensen

Emergency room visits are a fact of life for many people with rare diseases. And, when the patient is a child, these experiences can be especially stressful for the entire family.

For that reason, NORD was delighted to host a tweetchat with Texas Children’s Hospital – one of our nation’s premier teaching hospitals — on… Read More

May 25, 2016

TOPIC: Get Involved, Medical, Patients & Members

NORD Hosts Tweetchat with Texas Children’s Hospital on Navigating the Pediatric ER (May 26)

Posted by Christina Jensen

May 26, 2016
1:00 – 2:00 p.m. EDT


A trip to the emergency room with a rare disorder can present challenges. For one,  few members of the ER staff may be familiar… Read More

May 23, 2016

TOPIC: Events, Get Involved, Patients & Members, Research

Register for a FREE Webinar on the Undiagnosed Diseases Network (UDN)

Posted by Christina Jensen
The Undiagnosed Diseases Network (UDN) brings together clinical and research experts from across the country to try to solve the most challenging medical mysteries. As part of this project, patients with longstanding, unexplained symptoms can apply… Read More

May 23, 2016

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

NORD Summit 2016

Posted by Christina Jensen


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 16, 2016

TOPIC: Featured News

Watch Live: Tomorrow’s Rare Impact Awards Ceremony

Posted by Christina Jensen
Rare Impact Awards Live Stream: Watch the Ceremony Online
It is almost time for the Rare Impact Awards!  Not able to attend in person? NORD has you covered: join us for the live stream webcast starting tomorrowRead More