Events

Orphans In Jeopardy: Threats to the Development of Rare Disease Treatments

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RDLA and Shire in coordination with Rare Disease Caucus Co-Chairs Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY) invite you to attend a breakfast briefing:

Orphans In Jeopardy: Threats to the Development of Rare Disease Treatments

Thursday, September 12 at 10:00 a.m. EST
Room B-318 Rayburn House Office Building
Continental breakfast will be served*

Expert presenters will include:

The briefing will explore the following topics:

  • Concerns about the timely implementation of the FDA Safety and Innovation Act (FDASIA) in giving rare diseases access to Accelerated Approval
  • Regulatory challenges that prevent access for US patients to participate in clinical trials for rare disease treatments
  • The potential elimination of the Orphan Drug Tax Credit
  • H.R. 2725, the Food and Drug Administration Safety Over Sequestration (“FDA S.O.S.”) Act of 2013

For more information, please contact Julia Jenkins with Rare Disease Legislative Advocates (julia@rareadvocates.org or 202-803-6047), or Jenny Carey, CHI’s associate director of federal government relations and programs (carey@chi.org or 202-974-6323).


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 *This event is held in strict accordance with House and 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).