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August 16, 2017

TOPIC: Advocacy, Get Involved

Protecting Your Healthcare Coverage

Posted by Christina Jensen
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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

August 15, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members

Advance the Dialogue at the NORD Rare Summit

Posted by Christina Jensen
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It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare disease stakeholders come together to advance the dialogue on these… Read More

August 3, 2017

TOPIC: Advocacy, Events, Featured News, Press Releases

NORD Issues Statement on the Senate passage of the Food and Drug Administration Reauthorization Act of 2017

Posted by Lisa Phelps

Washington, D.C., August 3, 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 in response to the Senate passage of the Food and Drug Administration Reauthorization Act of 2017:

“Today the Senate joined the House in overwhelmingly passing the Food and Drug Administration Reauthorization Act… Read More

July 28, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on the Latest ACA Repeal and Replace Developments

Posted by Lisa Phelps

Washington, D.C., July 28, 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 efforts to repeal and replace the Affordable Care Act:

“In the early hours of the morning, the Senate voted down a plan to repeal key parts of the Affordable… Read More

July 25, 2017

TOPIC: Featured News, Medical, Patients & Members, Research

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Posted by Christina Jensen

Washington, D.C., July 25, 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 Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). 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… Read More