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Archives for: September 20th, 2018

NORD to Collaborate with FDA on Pilot Patient Engagement Activity

Written by Lisa Sencen on February 28, 2018

Listening Sessions to Enable Sharing Rare Disease Experiences with FDA Review Divisions

Washington, D.C., February 28, 2018—The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced a collaboration with the Food and Drug Administration (FDA) on a… Read More

Reflections on FDA Listening Session

Written by on December 16, 2016

fdaEarlier this week, I attended a listening session with the Commissioner of the FDA, Dr. Robert M. Califf. As a new employee in the NORD Policy Office, this was my first meeting at the FDA, and as such I was… Read More

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

Written by on January 19, 2013

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… Read More