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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

December 17, 2015

TOPIC: Press Releases, Featured News, Medical, Patients & Members, Research, Advocacy, Industry, Events, Patient Stories, Get Involved

Get Involved in Your State on Rare Disease Day

Posted at December 12, 2015 10:15 am by Jennifer Huron

 

On February 29, millions of people worldwide will come together to raise awareness about rare diseases and their impact on patients’ lives. This is our day to be heard, so speak up and tell your elected officials about what it is like to live rare. Here are some ideas to get started…

capitol-building-logo-design-concept-36879595State House… Read More

December 2, 2015

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

Be a Hero: Help NORD Educate Current and Future Medical Professionals

Posted at December 12, 2015 02:43 pm by Mary Dunkle

Education has always been a key component of NORD’s mission and this year we expanded our outreach to two vitally important audiences – medical professionals and students preparing for health-related careers.

Today’s healthcare professionals are aware that… Read More