December 5, 2007

Opening Statements

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

Rare Disease Panel One

  • Kathy Hunter, Founder & President, International Rett Syndrome Association [testimony]
  • Craig Polhemus, Executive Director, Prader-Willi Syndrome Association [testimony]
  • Vicky Whittemore, Ph.D., Vice President & Science Director, Tuberous Sclerosis Alliance [testimony]

Rare Disease Panel Two

  • Suzanne R. Pattee, J.D., Vice President of Regulatory & Patient Affairs, Cystic Fibrosis Foundation, with Dr. Michael P. Boyle, Director, Johns Hopkins Adult Cystic Fibrosis Program [testimony]
  • Barbara T. Boyle, National Executive Director & CEO, Huntington's Disease Society of America with Andrew S. Feigin, M.D. [testimony]
  • Pat Furlong, President, Parent Project Muscular Dystrophy [testimony]

Rare Disease Panel Three

  • Shelley Bowen, President, Barth Syndrome Foundation [testimony]
  • Josephine Grima, Ph.D., Vice PresidentĀ of Research & Legislative Affairs, National Marfan Foundation [testimony]
  • Amy K. Kirk, MSW, Coordinator of Family Services, Batten Disease Support and Research Association [testimony]

Audience Comments

Closing Remarks

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