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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 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 22, 2018

TOPIC: Advocacy, Featured News

NORD Issues Statement Regarding House Vote on Right to Try

Posted by Christina Jensen

Washington, D.C., March 22, 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 last night’s vote in the House of Representatives on the Right to Try Act:

“Last night, the House of Representatives passed the Right to Try Act. We are disappointed… Read More

March 21, 2018

TOPIC: Advocacy, Events, Featured News

National Organization for Rare Disorders (NORD) Announces Honorees for 2018 Rare Impact Awards

Posted by Christina Jensen

Washington, D.C., March 21, 2018—The National Organization for Rare Disorders (NORD) today announced the people, organizations, and innovators who will be honored at the 35th Anniversary Celebration presenting the Rare Impact Awards on May 17 in Washington, D.C.

The Rare Impact Awards is an annual event hosted by NORD, the leading independent nonprofit organization representing the 30 million Americans with… Read More

March 21, 2018

TOPIC: Advocacy, Featured News

NORD Joins Over 100 Patient and Provider Organizations in Opposition to Right to Try

Posted by Christina Jensen
In advance of another vote on the Right to Try Act scheduled to occur later today, NORD joined over 100 patient and provider organizations in sending a renewed letter to the House of Representatives stating our opposition.
Despite having failed to pass the bill last week, the House is quickly moving to try again.
While the latest version contains considerable improvements to patient safety… Read More

March 20, 2018

TOPIC: Advocacy, Featured News, Get Involved, Patients & Members, Press Releases

NORD Rare Action Network™ 2018 State Report Card

Posted 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