2013 Rare Disease Legislative Conference Presentations

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1. Welcome – Overview of the Day

   Julia Jenkins, Rare Disease Legislative Advocates

2. Message from Abbey Meyers on the Passage of the Orphan Drug Act

3. The Power of One: Advocacy Matters

   Anthony J. Castaldo, US Hereditary Angioedema Association

4. Back to Basics: HIV/AIDS Advocacy as a Model for Catalyzing Change

   Margaret Anderson, FasterCures

5. The Creating Hope Act: An Advocacy Success Story

   Mobilizing advocates and working with Congressional Staff to introduce & pass legislation

   • Nancy Goodman, Kids v Cancer
   • Saul Hernandez, Office of Rep. Butterfield (D-NC)
   • James “J.P.” Paluskiewicz, Office of Rep. Burgess (R-TX)

6. 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

7. Rare Disease Congressional Caucus

   • Helen Dwight, Office of Rep. Lance (R-NJ)
   • Nicole Cohen, Office of Rep. Crowley (D-NY)

8. Overview of the Political & Legislative Process

   Make up of 113th Congress

   Jen Bernstein, JC White Consulting

9. Health Funding: The Budget and Appropriations Process

   Updates on FDA, NIH funding and the threat of Sequestration

   • Kathryn G. Schubert, Coalition for Health Funding
   • Max G. Bronstein, ResearchAmerica!
   • Steven A. Grossman, Alliance for a Stronger FDA
   • Joel White, Council for Affordable Health Coverage

10. Health Reform Overview

    State Based Exchanges and Essential Health Benefits

    Joel White, Council for Affordable Health Coverage

11. Engaging Government Agencies

    Working to expand newborn screening

    Jim Bialick, Newborn Coalition

12. Rare Disease Awareness: Genes Ribbons on the Hill

    Nicole Boice, Global Genes Project

Thank You to our Event Sponsors:

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