Rare Disease News

Enrollment in Your Health Insurance Marketplace

Published August 29, 2013 by NORD

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It seems like just yesterday the Supreme Court handed down its controversial decision to uphold much of President Obama’s monumental healthcare reform bill, the Affordable Care Act. But with …

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Supreme Court Decision Consistent With Longstanding NORD Position

Published June 14, 2013 by NORD

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Yesterday’s ruling by the U.S. Supreme Court that human genes are a product of nature and cannot be patented is being hailed by many as a victory for patients and …

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

Published January 19, 2013 by NORD

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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 …

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NORD Issues Statement on the Death of Actor Jack Klugman

Published December 25, 2012 by NORD

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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 …

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Patients Will Benefit From New Public-Private Partnership

Published December 3, 2012 by NORD

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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 …

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

Published November 29, 2012 by NORD

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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 …

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The Story Behind the Rare Disease Day School Curriculum

Published November 12, 2012 by NORD

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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. …

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Glybera Becomes First-ever Gene Therapy Approved in Europe

Published November 2, 2012 by NORD

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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 …

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