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Apr. 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, 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

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

  1. Cynthia Bartlett says:

    My name is Cynthia Bartlett and my Mother in 1993 died of amitrophic lateral sclerosis . Took her years to fially get a diagnosis and finally know what was wrong with her. Its a horrible disease! I had two children, one boy & 1 girl. At 19 yrs my daughter stated having GI issues. 1yr later 2013 she was diagnosed with cyclic vomiting syndrome . When my son turned 19 he too started having the same symptoms but not as severe as my daughter . It has been a difficult journey but things continue to get worse for my daughter. She soon was diagnosed with chronic fatigue syndrome and summer of 2015 fibromyalgia . It has truly been a nightmare trying to get the proper help. Just 2 weeks ago she went to a new pain managment / fibromyalgia Docter and she said she thinks she may have mitochondrial disease. I was shocked because I read about it and had been asking Docters about it for years now. I was looked at by the Docters like I was crazy. We will see this pain doc in 2 more weeks and she has refered us to see a mitochondrial Docter … So we will see what happens. My daughter was to ill to go to work and had to drop out of collage in 2012. She has tried to hold down jobs but her illness always interferes and they let her go. She has lost her health insurance and is now on Medi-cal. It’s been almost impossible to get disability and has depleted my savings account. We r very overwhelmed and in dispair. I’m open to any knowledge and suggestions. This is another path of our journey and I feel like we r stating over and over again. At the same time I am very greatful because I think we might finally have some answers.