Featured News Archives - NORD (National Organization for Rare Disorders)

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

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 at August 8, 2017 01:10 am 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

Tags: FDA, FDA Reauthorization Act, FDARA, Patient Focused Drug Development Initiative, user fees

July 28, 2017

TOPIC: Advocacy, Featured News

NORD Issues Statement on the Latest ACA Repeal and Replace Developments

Posted at July 7, 2017 02:15 pm 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 at July 7, 2017 03:41 pm 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

Tags: Dr. John Atkinson, Dr. M Kathryn Liszewski, Genetic Counselor, Marsha Lanes, Rare Disease Database, Rare Disease Report, rare genetic disease, research, Retinal Vasculopathy with Cerebral Leukodystrophy, RVCL, Washington University School of Medicine

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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