August 16, 2017
TOPIC: Advocacy, Get Involved
Protecting Your Healthcare Coverage
Posted by Christina Jensen
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.
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
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
