RDLA hosted a Cocktail Reception and Movie Screening of Extraordinary Measures in Washington, DC to kick off Rare Disease Day Week. Special Guests included John Crowley, the father who inspired the movie and former Congress Member Dick Gephardt (D-MO) and now Chairman of the Council for American Medical Innovation.
Monday, November 15, 2010, FasterCures, Washington, DC
Special Guest John Crowley will help facilitate the meeting
Crowley’s leadership helped secure the Caucus co-chairs. He has two children with Pompe, a neuromuscular disease and was the inspiration for the film “Extraordinary Measures.”
The goal of the planning session is to receive input from the whole rare and neglected disease community and build consensus on a broad and inclusive federal legislative agenda advancing multiple initiatives to accelerate the development of new treatments for rare and neglected diseases.
Senate Committee on Health, Education, Labor, and Pensions (HELP), Full Committee Hearing – Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures
- Testimony of Dr. Christopher P. Austin, Director of the Chemical Genomics Center and Senior Advisor to the Director for Translational Research, National Institutes of Health
- Testimony of Dr. Emil Kakkis, President and Founder, Kakkis EveryLife Foundation
- Testimony of Dr. Jesse Goodman, Chief Scientist and Deputy Commissioner for Science and Public Health, Food and Drug Administration
- Testimony of Mr. Thomas Bollyky, Visiting Fellow, Center for Global Development
- Testimony of Ms. Diane Edquist Dorman, Vice President for Public Policy, National Organization for Rare Disorders
- Testimony of Ms. Gloria Steele, Senior Deputy Assistant Administrator for Global Health, USAID