Published April 28, 2016 by NORD
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 …
Read morePublished April 7, 2016 by NORD
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 …
Continue reading “Introducing the 2016 Rare Disease Day® Highlights Video”
Read morePublished March 1, 2016 by NORD
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 …
Continue reading “Neurology Reviews Publishes The Rare Neurological Diseaes Special Report”
Read morePublished December 17, 2015 by NORD
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.
Read morePublished December 4, 2015 by NORD
Sudden Infant Death Syndrome (SIDS) is the latest rare disease to have trended on Facebook, following the release of a new study in Pediatrics journal on December 2. The study says that …
Continue reading “New SIDS Study Says Other Factors May Increase Risk”
Read morePublished December 2, 2015 by NORD
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 …
Continue reading “Be a Hero: Help NORD Educate Current and Future Medical Professionals”
Read morePublished November 20, 2015 by NORD
Next week, a Food and Drug Administration panel of experts will hold the first of two meetings to review two drugs designed to slow the muscle wasting effects associated with Duchenne …
Read morePublished October 28, 2015 by NORD
NORD Publishes Free Online Guides to Encourage Diagnosis and Treatment for Patients The National Organization for Rare Disorders (NORD) has published a Physician Guide to Nontuberculous Mycobacterial Lung Disease to …
Continue reading “NORD Publishes Guide to Promote Physician Awareness of Rare Lung Disorder”
Read morePublished October 12, 2015 by NORD
Date: February 29, 2016 Global Theme: Patient Voice Global Slogan: Join us in making the voice of rare diseases heard By definition, each rare disease affects a small segment of …
Continue reading “Raise Your Voice: Rare Disease Day 2016 is Coming”
Read morePublished September 24, 2015 by NORD
Von Hippel-Lindau disease (VHL)
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