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April 28, 2016

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

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

April 22, 2016

TOPIC: Featured News, Advocacy, Get Involved

RareAction Network℠ Releases April State Legislative Tracker

Posted by Heidi Ross

RAN_USA_States_Colorized

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 are actively participating in to better the lives of people and families in the rare disease community.

Don’t see your state… Read More

April 19, 2016

TOPIC: Press Releases, Research

NORD Announces 20 Rare Disease Patient Groups Selected to Develop Natural History Studies as Part of FDA Cooperative Agreement

Posted by Jennifer Huron

NORD-FDANatural History Study Project (3)Twenty rare disease patient groups have been chosen to develop natural history studies with the assistance of the National Organization for Rare Disorders (NORD) supported in part by a cooperative agreement with the U.S. Food and Drug Administration (FDA).

NORD, the leading, independent nonprofit organization committed… Read More

April 15, 2016

TOPIC: Patients & Members, Advocacy, Get Involved

Advocacy Alert: Illinois Edges Closer to Establishing Rare Disease Commission

Posted by Jennifer Huron

HDR_PolicyAlert_2

This week, the Illinois House passed HB 4576. The House Bill seeks to establish a Rare Disease Commission that would give patients – many of whom are too young or sick to speak for themselves – a voice in the state government.  The bill would also provide educational resources for elected… Read More