Published May 16, 2016 by NORD
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 …
Continue reading “Watch Live: Tomorrow’s Rare Impact Awards Ceremony”
Read morePublished May 11, 2016 by NORD
Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National Institutes of Health where what …
Continue reading “Desiree Lyon Howe: 2016 Rare Impact Award Honoree”
Read morePublished May 6, 2016 by NORD
NORD, a nonprofit dedicated to helping people with rare diseases, reached a new milestone with 1 million visits to its website (www.rarediseases.org) in the past month. “As part of our …
Continue reading “NORD Website Reaches 1 Million Monthly Visits”
Read morePublished May 5, 2016 by NORD
A medical geneticist and expert on inborn errors of metabolism, Stephen Cederbaum, MD, has been affiliated for many years with the University of California, Los Angeles, as a professor, medical …
Continue reading “Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree”
Read morePublished May 5, 2016 by NORD
Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment. She composed “The Window,” a metaphor for her journey and countless trips …
Continue reading “Noah Victoria: 2016 Rare Impact Award Honoree”
Read morePublished April 29, 2016 by NORD
Patient Assistance Programs: Essential Patient Access to Vital Medicines Recently, some health care analysts have broadly criticized patient assistance programs (PAPs) as a significant cause of growth in prescription drug …
Continue reading “New Paper Addresses Health Care Costs and Patient Assistance Programs”
Read morePublished 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 22, 2016 by NORD
We are making progress throughout the country for the 1 in 10 Americans with rare diseases. Here is a list of legislative initiatives that NORD and our network of advocates …
Continue reading “RareAction Network℠ Releases April State Legislative Tracker”
Read morePublished April 15, 2016 by NORD
Volunteer by definition is a person who voluntarily undertakes or expresses a willingness to undertake a service. The role of a Membership Manager at NORD is a very unique and rewarding one. …
Continue reading “A Special Thank You to Volunteers in the Rare Disease Community”
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”
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