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Archives for: September 20th, 2018

NORD Webinar: Genetic Testing 101 for People with Rare Diseases

Written by Lisa Sencen on August 22, 2018
Do you want to learn more about how genetic testing can be helpful in the diagnosis and management of rare diseases?
We will cover these topics and more in a free webinar on August 22 at 3:00 p.m. EDT. Join us as Debra Regier, MD, Director of Genetic and Genomic Education at… Read More

NORD 35th Anniversary Blog Series: 1990s-2000s

Written by Jennifer Huron on June 25, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

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

Written by Laura Mullen on March 27, 2018


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… Read More

NORD Issues Statement Opposing the Preserving Employee Wellness Programs Act (H.R.1313)

Written by Jennifer Huron on March 15, 2017

Washington, D.C., March 15, 2017—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement opposing the Preserving Employee Wellness Programs Act (H.R.1313):

“Last week, the House Committee on Education and the Workforce voted to advance the Preserving… Read More