NORD Roared

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  • 05/21/2014

NORD Representative Is One of Five Experts Invited to Testify Before Key Congressional Subcommittee

WASHINGTON DC; May 21, 2014-----Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD),  testified yesterday before the U.S. House Energy and Commerce Health Subcommittee on advancing the development of treatments for Americans with unmet medical needs.

The hearing was focused on the new 21st Century Cures initiative announced April 30, 2014, by Energy & Commerce Committee Chairman Rep. Fred Upton (R-MI) and member Rep. Diana DeGette (D-CO) to accelerate the discovery, development, and delivery of innovative new medical treatments.

The experts who testified discussed recommendations in the President's Council of Advisors on Science and Technology (PCAST) Report on Drug Innovation pertinent to the new 21st Century Cures initiative.

Sasinowski, a longtime NORD advisor and board member, noted that accelerating the development of safe, effective medical therapies and cures has special significance for people with rare diseases, most of whom have no approved therapy at this time.

"I am reminded daily that the 30 million Americans affected by rare diseases have a vital and urgent need for faster development of therapies," he said.


Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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