Get Involved Archives - NORD (National Organization for Rare Disorders)

September 19, 2017

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

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

Posted at September 9, 2017 01:20 pm by Christina Jensen

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

Tags: ACA, Affordable Care Act, AHCA, American Health Care Act, BCRA, Better Care Reconciliation Act, Block Grants, Graham-Cassidy, healthcare, healthcare reform, HELP Committee, Medicaid, Principles for Healthcare Coverage Reform, Senate Health Education Labor and Pensions Committee

September 18, 2017

TOPIC: Advocacy, Get Involved, Sticky Posts for Homepage

Protecting Your Healthcare Coverage

Posted at September 9, 2017 10:52 am 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.

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

Tags: ACA, Affordable Care Act, AHCA, American Health Care Act, Better Care Reconciliation Act, Healthcare Bill, MacArthur Amendment, Rare Disease Day, Rare Diseases, SGS, Sitosterolemia, Sitosterolemia Foundation, University of Manitoba, Washington State University

August 31, 2017

TOPIC: Featured News, Get Involved, Medical, Patients & Members

Downloadable Hurricane Harvey Emergency Relief Resources

Posted at August 8, 2017 09:33 am by Christina Jensen

Hurricane Harvey has left thousands rid of their belongings and forced out of their homes. For individuals living with a rare disease, the impact of such natural disasters can be even more detrimental. Together, NORD staff worked with our Texas Rare Action Network State Ambassador, Debbie Skolaski to create the Hurricane Harvey Emergency Relief Resources packet,… Read More

Tags: Debbie Skolaski, Download, Emergency Relief Resources Packet, Food and Drug Administration, Houston, Hurricane Harvey, medical resources, NORD Member Organizations, pharmacies, Rare Action Network, Texas, Texas Rare Action Network State Ambassador

August 15, 2017

TOPIC: Advocacy, Events, Featured News, Get Involved, Industry, Medical, Patients & Members, Sticky Posts for Homepage

Advance the Dialogue at the NORD Rare Summit

Posted at August 8, 2017 09:49 am 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

Tags: Dr. Scott Gottlieb, FDA, healthcare, healthcare reform, Mike Porath, NORD Rare Summit, NORD Summit, Orphan Drug Act, Orphan products, Policy, Rare Diseases, Rare Diseases and Orphan Products Brekathrough Summit, Rare Summit, The Mighty

July 20, 2017

TOPIC: Advocacy, Featured News, Get Involved

The BCRA and Healthcare Reform: NORD’s Latest Update

Posted at July 7, 2017 04:32 pm by Paul Melmeyer

A note from Paul Melmeyer, NORD’s Director of Federal Policy, on where healthcare reform stands as of today and how to get involved.

As part of our “Days of Action to Protect Your Healthcare Coverage” campaign, we want to be sure that you are up-to-date on the latest news in Washington D.C.

Right now, Majority Leader McConnell and… Read More

Tags: ACA, Affordable Care Act, AHCA, American Healthcare Act, BCRA, Better Care Reconciliation Act, CBO, Congressional Budget Office, Days of Action to Protect Your Heatlhcare Coverage, Healthcare Bill, healthcare reform, Medicaid, pre-existing conditions

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