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June 7, 2013

TOPIC: Patients & Members

What are Your Favorite Rare Disease Movies?

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Summer is right around the corner, which means hot days, grilling, more time outside, and of-course the inevitable rainy-day stuck inside. In preparation for those days, I am trying to compile a list of movies that could make up a “rare disease film festival.” (more…)

January 19, 2013

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

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

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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 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