Wed, May 18, 2016
11:00 AM - 12:20 PM

Incentivizing Innovation for Rare Disease Treatment Development

 

Rare Disease Legislative Advocates in coordination with Rare Disease Congressional Caucus

Co-Chairs Representatives Leonard Lance (R-NJ) and G. K. Butterfield (D-NC) and 

Senators Orrin Hatch (R-UT) and Amy Klobuchar (D-MN) invite you to a briefing on:

Incentivizing Innovation for Rare Disease Treatment Development

Thursday, May 18th, 2017

11:00am – 12:20pm ET

Rayburn House Office Building, Room 2020

(Lunch will be provided.)


Moderator: Beth Frigola McGinn, Founder and Director, A Cure For Ellie

  • Orphan Product Extensions Now Accelerating Cures and Treatments Act (OPEN ACT, H.R. 1223) 
    • Representative Gus Bilirakis (R-FL) 
  • Rare Disease Mega Fund 
    • Representative Juan Vargas (D-CA) 
  • Prescription Drug User Fee Act (PDUFA) as a Vehicle to Foster Innovation and Improve the Lives of Patients (Speaker Invited)
  • Importance of Intellectual Property and Exclusivity for Driving Biotechnology Innovation
    • Stephen Ezell, Vice President, Global Innovation Policy, The Information Technology and Innovation Foundation
  • Rare Disease Incentives 101
    • Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders
  • Lessons Learned from Pediatric Research Equity Act (PREA) and Best Pharmaceuticals for Children Act (BPCA)
    • Richard Plotkin, Vice Chairman and Cofounder, The Max Cure Foundation 

Event Location

Rayburn House Office Building, Room 2020
50 Independence Ave SW
Washington, DC 20219


Register for this event