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TheStreet Open House

Amicus Therapeutics' CEO John F. Crowley To Advocate For Rare And Orphan Disease Community In Washington, D.C. This Week

Speaking at Research!America National Health Research Forum with FDA Commissioner Hamburg

Moderating Panel Discussion on Capitol Hill at Rare Disease Congressional Caucus Briefing

Joining Rep. Leonard Lance and Rep. Joe Crowley to Reintroduce "MODDERN CURES ACT"

CRANBURY, N.J., Sept. 11, 2013 (GLOBE NEWSWIRE) -- Amicus Therapeutics (Nasdaq:FOLD) today announced that John F. Crowley, Chairman and Chief Executive Officer, will advocate for the rare and orphan disease community at several upcoming events in Washington, D.C tomorrow on September 12, 2013:

Rare Disease Congressional Caucus Briefing

Date: Thursday, September 12, 2013

Time: 10:00 a.m. ET

Place: Rayburn House Building

Mr. Crowley will moderate a panel discussion at a briefing of the Congressional Rare Disease Caucus entitled, "In Jeopardy: Programs that Accelerate the Development of Rare Disease Treatments." The Rare Disease Congressional Caucus, co-chaired by Representatives Leonard Lance (R-NJ) and Joe Crowley (D-NY), is a forum for members of Congress to voice constituent concerns, share ideas, and build support for legislation that will improve the lives of people with rare diseases. During the hearing, Mr. Crowley and the panelists will discuss:

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

In conjunction with the Caucus Briefing, Mr. Crowley will join Representatives Lance and Crowley to support the reintroduction of the bipartisan "Modernizing Our Drug and Diagnostics Evaluation and Regulatory Network (MODDERN) Cures Act."

"We are fortunate to have the support of John Crowley, a nationally recognized rare disease advocate, as we reintroduce The MODDERN Cures Act," stated Congressman Lance. "This legislation seeks to promote the development of meaningful cures for the rarest diseases that have few or no options by removing outdated barriers and creating new invention and innovation opportunities." 

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