Scroll
To Top

October 13, 2017

TOPIC: Events, Press Releases

Nominations Open!

Posted by Jennifer Huron
RIA2018_StickyPost_240x206_1

Danbury, CT and Washington, D.C., October 13, 2017—Do you know a person or company that is making a difference in the fight against rare diseases?  Submit a nomination for the 2018 Rare Impact Awards by January 12:  rarediseases.org/rare-impact-awards.

The Rare Impact Awards celebrates efforts to help the 30 million Americans with rare diseases who, by the very nature of their… Read More

October 17, 2017

TOPIC: Press Releases

New Study Examines Use and Cost of Orphan Drugs

Posted by Jennifer Huron

Orphan Drugs Account for Only 7.9% of Pharmaceutical Spending in the U.S.

Washington, D.C., October 17, 2017—Orphan drugs accounted for only 7.9% of total drug sales in the U.S. in 2016, according to a study issued today by the QuintilesIMS Institute. The study, commissioned by the National Organization for Rare Disorders (NORD), analyzed the role of… Read More

October 10, 2017

TOPIC: Press Releases

NORD Announces Three New Hires to Lead Research, Education and Business Development Programs

Posted by Jennifer Huron

Danbury, CT, October 10, 2017The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization dedicated to helping the 30 million Americans with rare diseases, announces the appointment of three new hires: Vanessa Boulanger, Director of Research Programs; Sika Dunyoh, Director of Education Programs; and Alexa Moore, Vice President of Development.

“As NORD continues its efforts to help patients… Read More

September 26, 2017

TOPIC: Advocacy, Featured News, Patients & Members

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

Posted by Christina Jensen

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 vote on the most recent attempt to repeal and… Read More

September 26, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted by Christina Jensen
daysofaction-nord-homepage-sticky

The new administration and Congress are re-examining the United States health insurance system with the goal of repealing the Affordable Care Act, and replacing it with a new system.

Before the Affordable Care Act was enacted in 2010, rare disease patients faced discriminatory insurance practices due to their pre-existing condition. Patients were denied coverage to vital therapies and specialists, and… Read More