Thu, Mar 02, 2017
12:00 PM - 1:30 PM

March 2017 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) welcome you to: 

Advancing Rare Disease Treatments in the Era of Cures and Health Care Reform
Thursday, March 2nd, 2017
12:00 pm – 1:30 pm
Hart Senate Office Building Room 902, Washington, DC 20002

Lunch will be provided.

Moderator: Caroline Kruse, Executive Director, Platelet Disorder Support Association

  • Implementing the 21st Century Cures Act
    • Frank Sasinowski, Director, Hyman, Phelps & McNamara PC
  • The PDUFA Reauthorization Process in 2017
    • Eric Gascho, Vice President of Government Affairs, National Health Council
  • The Affordable Care Act Repeal and Replacement
    • Art Estopinan, President, The Estopinan Group LLC
  • New Models for Rare Disease Drug Development
    • Clare Thibodeaux, Ph.D, MBA, Director of Scientific Affairs, Cures Within Reach
  • The Role of Incentives in the Development of Orphan Therapies
    • Jill Wood, Chief Financial Officer and Co-Founder, Jonah's Just Begun, Chief Financial Officer and Co-Founder, Phoenix Next

To learn more about the rare disease caucus briefings, please visit our website:

Event Location

Room 902 of the Hart Senate Office Building
2nd St NE
Washington, DC 20002

The registration deadline for this event has passed.