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December 6, 2012

TOPIC: Industry, Medical, Patients & Members, Research

Can IBM Watson Replace Dr. Dhaliwal? Probably Not!

Posted by E. Michael D. (Mike) Scott

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

Posted by Peter L Saltonstall

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?

Posted by Peter L Saltonstall

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

Posted by Diane Dorman

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

November 21, 2012

TOPIC: Patients & Members

Barretstown – a Serious Fun Camp!

Posted by Alexandra Freitas

When I arrived through the gates at the Barretstown camp, I was eager to meet my campers and fellow group of volunteers, caras, Gaelic for friend. What I didn’t know is what a lasting impact this camp, set in Ballymore Eustace, Ireland, would have on my life. (more…)