Compassionate Allowance Outreach Hearing on Rare Diseases

• 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 President 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