Compassionate Allowance Outreach Hearing on Rare Diseases

• 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