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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

November 21, 2012

TOPIC: Patients & Members

Barretstown – a Serious Fun Camp!

Posted by Lisa Sencen

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…)

November 12, 2012

TOPIC: Featured News, Patients & Members

The Story Behind the Rare Disease Day School Curriculum

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Two weeks ago, as my flight landed in Boston, I stepped outside of the plane with a long tube in my arm, inside of which was a very special poster. It was the poster about a project I had completed with NORD. I was about to present this poster at the 2012 National Society of Genetic Counselors’ (NSGC) Annual… Read More

November 2, 2012

TOPIC: Featured News, Medical, Research, Industry

Glybera Becomes First-ever Gene Therapy Approved in Europe

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According to a report on the BBC News web site today, the European Commission has — for the very first time anywhere in the Western world — given final approval to market a gene therapy that corrects an inborn error of metabolism for the treatment of any type of human genetic disorder. Read More