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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

NORD Rare Action Network™ 2018 State Report Card

Posted at March 3, 2018 09:13 am by Christina Jensen
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

March 7, 2018

TOPIC: Advocacy, Events, Featured News, Get Involved, Patients & Members

Another Successful Rare Disease Day®

Posted at March 3, 2018 12:23 pm by Christina Jensen

Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018.  On this day, everyone RDD-LOGO-18-stickycomes together globally to bring attention to all 7,000 rare diseases that combined affect 30 million Americans–or 1 in 10 of us–and millions more… Read More

March 2, 2018

TOPIC: Featured News, Patients & Members, Research, Uncategorized

Changing the Landscape of Rare Disease Research

Posted at March 3, 2018 03:09 pm by Laura Mullen

*The following is a a guest blog posting by NORD’s Director of Research Programs, Vanessa Boulanger, originally published 2/28/18 on PCORI.org at https://www.pcori.org/blog/changing-landscape-rare-disease-research?utm_source=general`

 

A rare disease, by definition, affects fewer than 200,000 individuals in the United States. Up to 30 million Americans have a rare disease, and most conditions are poorly understood. The National Organization for Rare Disorders (NORD), the… 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