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January 19, 2013

TOPIC: Advocacy, Featured News, Industry, Patients & Members

Orphan Drug Act at 30: Will Success Become Too Expensive?

Posted at January 1, 2013 10:58 pm by

Reprinted with permission from FDA Matters:  By Steven Grossman

The Orphan Drug Act (ODA) turned 30 this month, demonstrating that good laws really can have an enduring impact.  Amidst the celebrations, a reporter asked me a provocative question:  Can we afford more orphan drugs costing hundreds of thousands of dollars per year?  FDA Matters answered “yes”…. Read More

December 25, 2012

TOPIC: Advocacy, Featured News, Industry

NORD Issues Statement on the Death of Actor Jack Klugman

Posted at December 12, 2012 06:41 pm by Mary Dunkle

Jack Klugman touched the lives of millions of Americans through his support for what ultimately became the Orphan Drug Act.  By portraying on his Quincy, M.E. television show the plight of people with rare diseases with no treatment, Mr. Klugman focused a spotlight on the need for incentives to encourage the development of therapies for small patient populations.  He… Read More

December 14, 2012

TOPIC: Advocacy, Patients & Members

Campaign to Educate State Legislators for Rare Disease Day

Posted at December 12, 2012 08:34 pm by admin

Each year NORD provides a list of suggested activities for Rare Disease Day. This year, one of those major projects is a nationwide campaign to help leaders of rare disease patient organizations — and those who support them — educate their state officials for Rare Disease Day 2013 (Feb. 28, 2013). Read More

December 3, 2012

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

Patients Will Benefit From New Public-Private Partnership

Posted at December 12, 2012 09:53 pm by

FDA Commissioner Margaret Hamburg, MD, today announced a new public-private partnership to develop regulatory science that will speed patient access to new medical device technologies.  This is the first public-private partnership specifically focusing on this need. (more…)

November 28, 2012

TOPIC: Advocacy

Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits

Posted at November 11, 2012 02:20 am by

On November 20, 2012, the Centers for Medicare and Medicaid Services (CMS) released the long-awaited proposed rules for health insurance market reforms and essential health benefits. These provisions of the Affordable Care Act (ACA) are meant to protect patients with pre-existing conditions from discrimination and provide protections against other insurance company abuses. We’re now in the process of reviewing… Read More