Rare & Neglected Disease Congressional Caucus Planning Meeting

Monday, November 15, 2010, FasterCures, Washington, DC

Special Guest John Crowley will help facilitate the meeting
Crowley’s leadership helped secure the Caucus co-chairs. He has two children with Pompe, a neuromuscular disease and was the inspiration for the film “Extraordinary Measures.”

The goal of the planning session is to receive input from the whole rare and neglected disease community and build consensus on a broad and inclusive federal legislative agenda advancing multiple initiatives to accelerate the development of new treatments for rare and neglected diseases.

Your organization is welcome to submit recommendations ahead of time to patientadvocate@kakkis.org. Items submitted should be legislative in nature, politically reasonable and achievable, and inclusive of multiple diseases or non disease specific. All suggestions received will be compiled for discussion at the meeting.

The items submitted will be organized into the following categories:

  • Ensuring access & reimbursement
  • Incentives to industries to spur innovation
  • Grants and training for academics
  • FDA regulatory issues
  • Funding NIH/FDA/HHS grants or programs

Other Agenda Topics:

  • Outreach for Congress Member Participation
  • Update on Legislation and Appropriations
  • PDUFA Reauthorization
  • Rare Disease Day

Click to view the Rare Neglected Disease Congressional Caucus Post Meeting Slides