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Earlier this week, the National Organization for Rare Disorders? (NORD) broke previous records with its 2019 Rare Diseases & Orphan Products Breakthrough Summit, welcoming over 900 registrants in Washington, DC - where the APF was represented.
The NORD Summit is the largest and most innovative multi-stakeholder event of its kind, drawing together participants from across the rare disease community to discuss the most current and urgent topics related to rare diseases and orphan products. The 2019 theme focused on why “The Time is Now” to drive innovation, collaboration, advocacy and research.
Keynote speeches were informative and inspiring, with speakers including CDER’s Associate Director for Strategic Initiatives, Theresa Mullin, PhD and FDA Acting Director Ned Sharpless, MD. In addition, there was an impassioned keynote speech delivered by Health and Human Services Secretary Alex Azar, the highest ranking government official ever to speak at a NORD Summit.
Other highlights from the Summit included panels featuring key opinion leaders, an NIH conversation on why it is a unique moment for rare disease research, a town hall with the three FDA Center Directors and an interactive dialogue with FDA senior staff.
