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May 29, 2018

TOPIC: Advocacy, Featured News, Press Releases

NORD Launches RareInsights, New Initiative to Support Data-Driven Advocacy, and Presents 5 Myths About Orphan Drugs and the Orphan Drug Act

Posted at May 5, 2018 11:07 am by Laura Mullen

Washington, D.C., May 30, 2018—The National Organization for Rare Disorders (NORD) today launched RareInsights™, its new initiative to expand public knowledge of rare diseases and translate that knowledge into real-world solutions for patients and families, and kicked off the program with the  infographic 5 Myths About Orphan Drugs and the Orphan Drug Act.

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May 24, 2018

TOPIC: Featured News, Press Releases, Research, Sticky Posts for Homepage

New Research Funding Opportunities Available from NORD

Posted at May 5, 2018 10:25 am by Laura Mullen
NORD 2018 Research Grants Available

All U.S. and international researchers are encouraged to apply by the initial application deadline of July 16, 2018

 

Washington, D.C., May 24, 2018 – The National Organization for Rare Disorders (NORD), the leading independent, nonprofit organization committed to the identification, treatment, and cure of rare disorders, announces the availability of new research grants to support the study… Read More

March 27, 2018

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

Neurology Reviews® and NORD Publish the 2018 Rare Neurological Disease Special Report

Posted at March 3, 2018 11:11 am by Laura Mullen

 

Parsippany – March 26, 2018 – The 2018 Rare Neurological Disease Special Report has been published by Neurology Reviews in collaboration with NORD, the National Organization for Rare Disorders, the leading independent nonprofit representing the 30 million Americans with rare diseases.

 Neurology Reviews is pleased to provide the most current information and news about rare neurological diseases. The 4th annual edition of the Read More

March 20, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases, Sticky Posts for Homepage

NORD Rare Action Network™ 2018 State Report Card

Posted at March 3, 2018 09:13 am by Christina Jensen
nord-report-card-sticky-post
Washington, DC, March 20, 2018—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network™ (NORD RAN). The 2018 “State Report Card” indicates that progress in several areas of health policy… Read More

February 28, 2018

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

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Posted at February 2, 2018 09:09 am by Christina Jensen

Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions

Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a pilot project that would help FDA medical reviewers better… Read More