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December 14, 2012

TOPIC: Advocacy, Patients & Members

Campaign to Educate State Legislators for Rare Disease Day

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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 6, 2012

TOPIC: Industry, Medical, Patients & Members, Research

Can IBM Watson Replace Dr. Dhaliwal? Probably Not!

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Everyone in the rare disease community who watched IBM’s “Watson” computer perform on “Jeopardy” early this year probably started to wonder about the potential of “Watson-like” systems to assist doctors in accelerating the accurate diagnosis of rare and unusual medical disorders — one of the first and most critical steps in assuring quality of care. … READ… Read More

December 3, 2012

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

Patients Will Benefit From New Public-Private Partnership

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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 29, 2012

TOPIC: Featured News

What Would You Consider “Essential Health Benefits” For the Disease of Concern to You?

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December 26 is the deadline for submitting comments on the proposed rule for Essential Health Benefits released recently by the Department of Health and Human Services (HHS).  Essential Health Benefits are the core package of items and services that must be offered in individual and small group health plans under the Affordable Care Act. Read More

November 28, 2012

TOPIC: Advocacy

Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits

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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