December 4, 2007

Opening Statements

  • Michael J. Astrue, Commissioner of Social Security [statement]
  • Stephen Groft, Pharm. D., Director, NIH Office of Rare Diseases [statement]
  • Frank Cristaudo, Chief Administrative Law Judge
  • David Rust, Acting Deputy Commissioner for Disability and Income Security Programs

Overview of Rare Diseases

  • Diane Dorman, Vice President for Public Policy, National Organization for Rare Disorders [testimony]
  • Paul Lipkin, M.D., Director , Center for Development and Learning , Kennedy Krieger Institute  and  Assistant Professor of Pediatrics, The Johns Hopkins University School of Medicine, for The American Academy of Pediatrics [testimony]
  • Noni M. (Sissi) Langford, Chair, Committee on Federal Legislation, on behalf of the National MPS Society (Caregiver). [testimony]

Rare Diseases and the Adjudicatory Process

  • Linda Landry, Senior Attorney, Disability Law Center, Boston [testimony]
  • William Leach, Staff Attorney, Access Program, Tampa  (Primary Spokesperson)  [testimony]
  • Kim Bernstein, Director, Access Program, Tampa (Secondary Comments)

Rare Diseases in Adults

  • Walter Koroshetz, M.D., Deputy Director, National Institute of Neurological Disorders and Stroke,  National Institutes of Health [testimony]
  • Steve Gibson, Vice President of Government Relations & Public Affairs, ALS Association [testimony]
  • Ron Bartek, President, Friedreich's Ataxia Research Alliance (Caregiver). [testimony]

Rare Diseases and Technology

  • Dr. R. Rodney Howell, M.D., President, American College of Medical Genetics Foundation & Chair, Secretary Leavitt’s Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children [testimony]
  • William A. Gahl, M.D., Ph.D., Clinical Director, National Human Genome Research Institute, National Institutes of Health with P. Suzanne Hart, Ph.D. [testimony]
  • Andrea Gropman, MD, Associate Professor of Pediatrics and Neurology, George Washington University, School of Medicine and Health Sciences, Attending in Neurology, Children's National Medical Center

Closing Remarks

Contact the Compassionate Allowances Team