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May 5, 2016

TOPIC: Featured News

Dr. Stephen Cederbaum: 2016 Rare Impact Award Honoree

Posted by Christina Jensen
Cederbaum 10.05.05

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 researcher and clinician. He has conducted pioneering research, published widely acclaimed papers and advanced understanding of urea cycle disorders, and in particular arginase deficiency, in his distinguished… Read More

May 5, 2016

TOPIC: Featured News, Patient Stories

Noah Victoria: 2016 Rare Impact Award Honoree

Posted by Christina Jensen
Noah @ NIH

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 to Children’s Hospital and the National Institutes of Health clinical centers.  “My car window has been my companion the entire time,” she says. Read More

April 29, 2016

TOPIC: Advocacy, Featured News

New Paper Addresses Health Care Costs and Patient Assistance Programs

Posted by Christina Jensen

HDR_PolicyAlert_2

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 spending and overall health care costs.  In a new paper, NORD addresses this issue and explains the essential function of PAPs… Read More

April 28, 2016

TOPIC: Featured News, Industry, Medical, Patients & Members, Press Releases, Research

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

Posted 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