Rare Disease News

30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Published October 23, 2013 by NORD

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NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis? We were stunned at …

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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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Campaign to Educate State Legislators for Rare Disease Day

Published December 14, 2012 by NORD

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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 …

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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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Proposed Rules for Health Insurance Market Reforms and Essential Health Benefits

Published November 28, 2012 by NORD

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Advocacy

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 …

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