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…
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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
July 20, 2017
TOPIC:
Events, Featured News, Get Involved, Industry, Medical, Research
Posted by Christina Jensen
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.
The meeting, which takes place on an annual basis, brings… Read More
Tags: Data-Sharing, Dr. Scott Gottlieb, FDA, FDA Commissioner, Keynote Address, Mike Porath, NIH, NORD Summit, Patient Assistance Programs, Rare Disease Summit, Rare Diseases and Orphan Products, Rare Diseases and Orphan Products Breakthrough Summit, Right to Try, The Mighty, TheMighty.com
July 13, 2017
TOPIC:
Advocacy, Featured News
Posted by Christina Jensen
Washington, D.C., July 13, 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 release of a revised draft of the Senate Leadership’s Better Care Reconciliation Act of 2017:
Senate Leadership today released a revised draft of the Better Care Reconciliation Act of 2017… Read More
Tags: BCRA, Better Care Reconciliation Act, essential health benefits, Healthcare Bill, Healthcare Coverage, healthcare reform, Medicaid, Pre-Existing Condition Protections, Protect Patients Now, protect your healthcare coverage, Revised Senate Bill
July 12, 2017
TOPIC:
Advocacy, Featured News
Posted by Christina Jensen
Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval.
Passing this bill is a crucial step in reauthorizing four user fee programs that ensure the Food and Drug Administration (FDA) has the tools it needs… Read More
Tags: FDA, FDA Reauthorization Act, Food and Drug Administration, House of Representatives, National Health Council, NORD, President Donald Trump, Rare Disease Advocacy, Senate
