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November 29, 2012

TOPIC: Featured News

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

Posted at November 11, 2012 10:16 pm by

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 12, 2012

TOPIC: Featured News, Patients & Members

The Story Behind the Rare Disease Day School Curriculum

Posted at November 11, 2012 04:39 pm by

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

Posted at November 11, 2012 07:37 pm by

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