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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

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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, regulatory agencies and advocacy organizations to better serve and improve patient outcomes.

“If an FDA-approved treatment exists, patients deserve to have access to it,” said Peter L. Saltonstall, president and CEO of NORD. “No one is doing anything like this to serve the 1 in 10 Americans with rare diseases and we are thrilled to partner with Trio Health as part of NORD’s advocacy and patient assistance efforts.”

The collaboration creates the first common system for gathering data on treatment access and outcomes to produce insights that improve quality of care.  It marries NORD’s commitment to patient advocacy and improving access to therapies since its founding 33 years ago with new opportunities to leverage data-driven insights. Drug manufacturers and patient advocates will have the ability to gain insights into the overall patient experience, and the unforeseen roadblocks that can undermine effectiveness.

“Our joint goal is to bring transparency to the entire patient journey,” said Brent Clough, CEO of Trio Health, which has been providing similar real-world data on more common diseases since 2013. “Trio Health is honored to partner with NORD and fill a critical knowledge gap that can ultimately improve patient care.”

About National Organization for Rare Disorders (NORD)

A leading, independent nonprofit organization, NORD provides advocacy, education, patient services and research to address the needs of the 30 million Americans with rare diseases—1 in 10 people, most of whom are children—and those seeking to improve their lives. In addition to educational resources for patients, families, medical professionals and students available on its website (, NORD works with 250 member organizations and collaborates with many others in specific causes of importance to the rare disease patient community.

About Trio Health

Trio Health’s mission is to improve the quality of care in patient outcomes through coordinating the efforts of all patient care stakeholders. Their first-its-kind Innervation platform tracks patients throughout the course of their treatment, giving pharmaceutical/biotechnology companies, specialty pharmacies and physicians access to information and opportunities that simply don’t exist anywhere else. Learn more at