Rare Disease Caucus Lunch Briefing – Treatments for Ebola & Other Life-Threatening Rare Diseases


Rare Disease Legislative Advocates and EB Research Partnership in coordination with Rare Disease Congressional Caucus Co-Chairs

Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), will host a briefing on

“Creating Economic Incentives to Spur the Development of Treatments for Ebola and Other Life-Threatening Rare Diseases”

Thursday, November 13, 2014
12:00 noon – 1:30 pm
Rayburn House Office Building, Room: B-318

Lunch Provided by event sponsors Shire, Alexion, Novartis & Sarepta

Moderator:  Todd E. Gillenwater, President & CEO, CHI – California Healthcare Institute

  • Options And Costs For Developing New Drugs Quickly And Under Duress: The Case Of Ebola, Bernard Munos, Senior Fellow, FasterCures, and Founder, InnoThink
  • Investments in Innovative Technology to Rapidly Respond to Ebola and Other Infectious Disease Outbreaks, Diane Berry, PhD, VP, Global Health Policy & Government Affairs, Sarepta Therapeutics
  • Partnering For a Cure for a Rare Disease: A Parent’s Perspective, Jamie Silver, Parent Advocate,  Epidermolysis Bullosa (EB) Research Partnership
  • Effects of Reimbursement Policies on Innovation, Joel White, President, Horizon Government Affairs
  • Protecting the Orphan Drug Tax Credit, Ted Buckley, PhD, Head of US Government Relations and Public Affairs, Shire
  • MODDERN Cures Act, Myrl Weinberg, CEO, National Health Council
  • New Incentives to Repurpose Major Market Drugs for Rare Diseases, Emil Kakkis, MD, PhD, President, EveryLife Foundation for Rare Diseases

This event is held in strict accordance with U.S. House of Representatives and U.S. Senate Ethics rules.  Food and refreshments of a nominal value will be provided as allowed by House Rule 25, clause 5(a)(3)(U) and Senate Rule 35.1(d)(1).

Limited Seating, RSVP to attend: