Wed, Feb 28, 2018
12:30 PM - 1:45 PM

February 2018 Rare Disease Congressional Caucus Briefing


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

The Rare Disease Lifecycle: Diagnosis to Treatment
Wednesday, February 28th, 2018
12:30 – 1:45 pm
Russell Senate Office Building Room 325, Washington, DC 20002

Lunch will be provided.

Moderator: Brian Baird, Former Member of Congress and President, 4Pir2 Communication

  • Opening Statement
    • Representative Leonard Lance (R-NJ) 
  • Diagnostic Challenges and Policy Solutions
    • Gina Szajnuk, Co-Founder and Executive Director, Rare and Undiagnosed Network (RUN)
  • Incentives for Rare Disease Treatment Development
    • Deanna Portero, Executive Director, Fibrous Dysplasia Foundation 
  • Bridging the ‘Valley of Death’ Gap in Childhood Rare Disease Research and Development 
    • Robert Selliah, PhD, Founder and CEO, American MedChem Nonprofit Corp.
  • Modernizing Clinical Trial Designs 
    • Isabelle Lousada, CEO and President, Amyloidosis Research Consortium 
  • Policy challenges for Covering Innovative Treatments 
    • Annie Kennedy, Senior Vice President, Legislation and Public Policy, Parent Project Muscular Dystrophy

Event Location

Kennedy Caucus Room
Russell Senate Office Building
Washington, DC 20002

The registration deadline for this event has passed.