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NORD Applauds Congress for Bipartisan Action on New Law

May 2012 - Many Members of Congress played key roles in shaping the FDA Safety and Innovation Act.

Many Members of Congress played key roles in shaping the FDA Safety and Innovation Act. NORD has written letters to Members of Congress and Congressional staff who worked closely with us on many aspects of this legislation, as it was developed.

In particular, NORD would like to recognize the following, who worked closely with us on provisions of importance to rare disease patients and their families:

Leadership of the Senate HELP (Health, Education, Labor and Pensions) and House Energy & Commerce Committees:

HELP Committee Chairman:  Sen. Tom Harkin (D-IA)

Ranking Member:  Sen. Mike Enzi (R-WY)

Energy & Commerce Committee:  Rep. Fred Upton (R-MI)

Ranking Member:  Henry Waxman (D-CA)

For Leadership Related to Drug Approval and Patient Access Provisions

Enhancement of Accelerated Patient Access to New Medical Treatments

  • Senator Kay Hagan (D-NC) and Representatives Cliff Stearns (R-FL) and Edolphus (Ed) Towns (D-NY)

Breakthrough Therapies

  • Senators Michael Bennet (D-CO), Orin Hatch (R-UT), and Richard Burr (R-NC), as well as Representatives Brian Bilbray (R-CA) and Diana DeGette (D-CO)

Consultation with External Experts on Rare Diseases, Targeted Therapies and Genetic Targeting of Treatments

  • Senator Sheldon Whitehouse (D-RI) and Representatives Ed Markey (D-MA), Thomas Marino (R-PA) and Cliff Stearns (R-FL)

Rare Disease Pediatric Disease Priority Review Voucher Incentive Program

  • Senators Robert Casey (D-PA), Scott Brown (R-MA), Sherrod Brown (D-OH), Johnny Isakson (R-GA) and Al Franken (D-MN), as well as Representatives Michael McCaul (R-TX) and G.K. Butterfield (D-NC)

For Leadership Related to Medical Device Regulatory Improvements

Humanitarian Device Exemptions

  • Senators Al Franken (D-MN) and Lamar Alexander (R-TN), as well as Representative Charles Bass (R-NH)

For Leadership Related to Other Provisions

Conflict of Interest

  • Senators Amy Klobuchar (D-MN), Richard Burr (R-NC), and Michael Bennet (D-CO), as well as Representative Michael Burgess (R-TX)

 
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