NIH and FDA Funding Update
Rachel Weissman, Policy and Advocacy Manager, Research!America
The Prescription Drug User Fee Act (PDUFA) Reauthorization Update
Eric Gascho, Vice President, Policy and Government Affairs, National Health Council
The Working Group on Compassionate Use and Pre-Approval Access (CUPA) Legislation
Dr. Alison Bateman-House, Assistant Professor in the Division of Medical Ethics and co-chair, NYU School of Medicine Working Group
Orphan Product Extensions Now, Accelerating Cures and Treatments Act (OPEN ACT) and Newborn Screening
Max Bronstein, Chief Advocacy and Science Policy Officer, EveryLife Foundation for Rare Diseases
Upcoming RDLA Events (RARE on the Road and In-District Lobby Days)
Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
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The agenda is OPEN. Please submit possible agenda items to hclauson@everylifefoundation.

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