Rare Disease News

NORD Summit 2016

Published May 23, 2016 by NORD

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NORD’s Rare Diseases and Orphan Products Breakthrough Summit will be held in Arlington, VA October 17-18

Watch Live: Tomorrow’s Rare Impact Awards Ceremony

Published May 16, 2016 by NORD

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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 …

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Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Published May 11, 2016 by NORD

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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 …

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NORD Website Reaches 1 Million Monthly Visits

Published May 6, 2016 by NORD

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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 …

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Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree

Published May 5, 2016 by NORD

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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 …

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Noah Victoria: 2016 Rare Impact Award Honoree

Published May 5, 2016 by NORD

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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 …

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New Paper Addresses Health Care Costs and Patient Assistance Programs

Published April 29, 2016 by NORD

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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 …

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NORD and Trio Health to Provide Real-World Insights to Improve Access and Quality of Care for More Than 7,000 Rare Diseases

Published April 28, 2016 by NORD

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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 …

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RareAction Network℠ Releases April State Legislative Tracker

Published April 22, 2016 by NORD

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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 …

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A Special Thank You to Volunteers in the Rare Disease Community

Published April 15, 2016 by NORD

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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. …

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