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Archives for: September 6th, 2018

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 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

NORD Issues Statement on Recent CMS Actions Pertaining to Patient Access Within Medicaid Formularies

Written by Christina Jensen on June 27, 2018
Washington, D.C., June 27, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding this week’s actions by the Centers for Medicare and Medicaid Services (CMS) to protect patient access to medication… Read More

NORD Rare Action Network® 2018 State Report Card

Written by Christina Jensen on March 20, 2018
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”… Read More

NORD Joins 125 Patient Organizations in Support of Medicaid Formulary Access

Written by Laura Mullen on February 24, 2018

Washington, D.C., February 26, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, last week joined 125 rare disease patient organizations in sending a letter to Medicaid Directors all across the country highlighting the importance of Medicaid… Read More

NORD Issues Statement on Senate Leadership’s Recent Update on “Graham-Cassidy” Proposal

Written by Christina Jensen on September 26, 2017

Washington, D.C., September 26, 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 regarding the latest effort to repeal and replace the Affordable Care Act:

“Senate Leadership announced today that they will not proceed with a… Read More