2013 Rare Disease Legislative Conference Presentations
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Welcome – Overview of the Day
Julia Jenkins, Rare Disease Legislative Advocates
- Message from Abbey Meyers on the Passage of the Orphan Drug Act
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The Power of One: Advocacy Matters
Anthony J. Castaldo, US Hereditary Angioedema Association
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Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change
Margaret Anderson, FasterCures
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The Creating Hope Act: An Advocacy Success Story
Mobilizing advocates and working with Congressional Staff to introduce & pass legislation
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CureTheProcess: Improving the FDA Regulatory Process
Building a grassroots coalition to move a policy discussion to successful legislation
Emil Kakkis, MD, PhD, EveryLife Foundation for Rare Diseases
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Rare Disease Congressional Caucus
- Helen Dwight, Office of Rep. Lance (R-NJ)
- Nicole Cohen, Office of Rep. Crowley (D-NY)
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Overview of the Political & Legislative Process
Make up of 113th Congress
Jen Bernstein, JC White Consulting
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Health Funding: The Budget and Appropriations Process
Updates on FDA, NIH funding and the threat of Sequestration
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Health Reform Overview
State Based Exchanges and Essential Health Benefits
Joel White, Council for Affordable Health Coverage
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Engaging Government Agencies
Working to expand newborn screening
Jim Bialick, Newborn Coalition
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Rare Disease Awareness: Genes Ribbons on the Hill
Nicole Boice, Global Genes Project
Thank You to our Event Sponsors:
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