Written by Lisa Sencen on September 20, 2018
Make your choice from this menu of thought-provoking, informative Lunch & Learn sessions available for attendees of the 2018 NORD Rare Summit. With only 25 days to go, be sure to save your seat at the table by registering for the Summit and choosing your lunch option now! Lunch &… Read More
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
Written by on December 16, 2016
Earlier 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
Written by Jennifer Huron on September 15, 2015
Today, the FDA released a blog post about a new tool for drug developers. The FDA writes, “With the vast majority of rare diseases still without FDA-approved treatments, we have recently released a new resource for drug developers — draft guidance document — designed to help them… Read More
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