Rare Disease Congressional Caucus Briefing Action Alert

November 13, 2012

On Wednesday, November 14, RDLANational Health Council, and Shire, in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY) will be participating in a briefing to discuss next steps for rare disease policy.

Help ensure the Rare Disease Caucus Briefing is a success!

How can you help?

By following these simple steps to influence and encourage your Congress Member to send a staffer to the Briefing.


Congressional Staffers who attend the Briefing will learn about the issues affecting the rare disease community, thereby increasing awareness and ensuring timely implementation of rare disease provisions of specific policies.

  • Rare Disease provisions in The Food and Drug Administration Safety and Innovation Act (FDASIA), S. 3187
  • MODDERN Cures Act, H.R. 3497
  • Patient Impact of regulatory challenges and roadblocks to participation in clinical trials only conducted outside the US
  • International policy implications of US intellectual property provisions and their impact on innovation & access to new therapies

Please take 5 minutes to call and/or contact Congress today!

Stay Connected

Sign up for updates straight to your inbox.