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October 23, 2013

TOPIC: Advocacy, Featured News, Medical, Patients & Members

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

Posted at October 10, 2013 02:44 pm by Mary Dunkle

 

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 the response. Within the first few hours, we got 200 replies and 20% of those who responded had waited 10 years or longer to get an accurate… Read More

August 29, 2013

TOPIC: Advocacy, Featured News, Patients & Members

Enrollment in Your Health Insurance Marketplace

Posted at August 8, 2013 03:27 pm by Paul Melmeyer

 

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 just a little over a month until the health insurance marketplaces open for enrollment on October 1st, it is now more important than ever to understand how healthcare reform affects… Read More

January 19, 2013

TOPIC: Advocacy, Featured News, Industry, Patients & Members

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

Posted at January 1, 2013 10:58 pm by

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 celebrations, a reporter asked me a provocative question:  Can we afford more orphan drugs costing hundreds of thousands of dollars per year?  FDA Matters answered “yes”…. Read More

December 25, 2012

TOPIC: Advocacy, Featured News, Industry

NORD Issues Statement on the Death of Actor Jack Klugman

Posted at December 12, 2012 06:41 pm by Mary Dunkle

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 of people with rare diseases with no treatment, Mr. Klugman focused a spotlight on the need for incentives to encourage the development of therapies for small patient populations.  He… Read More