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May. 22, 2014

TOPIC: Advocacy

NORD Board Member Testifies Before Energy & Commerce Health Subcommittee

Posted by Mary Dunkle

Frank J. Sasinowski, representing the National Organization for Rare Disorders (NORD), was one of five individuals who testified on Tuesday 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.

In addition to Sasinowski, witnesses presenting testimony at the Subcommittee meeting were:

  • Garry A. Neil, MD, Global Head of Research & Development, Medgenics, Inc.;
  • Sara Radcliffe, Executive Vice President of Health Section, Biotechnology Industry Organization;
  • Jeff Allen, Executive Director, Friends of Cancer Research; and
  • Sean Tunis, MD, Founder and CEO, Center for Medical Technology Policy.

Sasinowski presented four proposals, drawing upon studies commissioned by NORD and others as well as his involvement with the President’s Council of Advisors on Science and Technology.

Sasinowski has served as both Chair and Vice Chair of NORD’s board of directors and in 2013 was presented with NORDs Lifetime Achievement Award. He joined FDA in 1983 as regulatory counsel in the Center for Drugs and Biologics, where he was key to implementing both the Orphan Drug Act of 1983 and the Hatch-Waxman Act of 1984. In 1987, Sasinowski joined the law firm Hyman, Phelps & McNamara PC.

READ THE TEXT OF HIS TESTIMONY

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