Wednesday, May 17th, 2017 
12:00 – 1:00 pm ET
440 First Street Northwest, Suite 430
Washington, DC 20001
 
Agenda: 

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.org

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