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October 5, 2017

TOPIC: Medical, Research

NORD Publishes New Report on RYR-1 Related Diseases

Posted by Lisa Sencen

Washington, D.C., October 5, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on RYR-1-Related Diseases. This new resource is available free online to individuals around the world.

As the primary advocacy organization in the U.S. for people who have rare diseases, NORD provides… Read More

September 26, 2017

TOPIC: Featured News, Members, Advocacy

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

Posted by Lisa Sencen

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 Lisa Sencen

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

September 19, 2017

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

NORD Issues Statement Opposing the “Graham-Cassidy” ACA Replacement Plan

Posted by Lisa Sencen

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 “Graham-Cassidy” plan to repeal and replace the Affordable Care Act (ACA):

“The Senate is currently considering a proposal put forward by Senators Graham, Cassidy, Heller, and Johnson that would repeal and replace the Affordable… Read More

September 14, 2017

TOPIC: Advocacy

Over 140 Patient Organizations Support the Orphan Drug Tax Credit

Posted by Lisa Sencen

Today, NORD joined over 140 patient organizations in sending a letter to Congress in support of the Orphan Drug Tax Credit (ODTC). We are extremely grateful to all those organizations that joined us and lent their support. It is vital that the Orphan Drug Tax Credit remains in place, and the rare disease patient community will continue to fight… Read More