November 14: Monthly Legislative Meeting

RDLA’s November Legislative Webinar and In-Person Meeting
Tuesday, November 14th, 2017
12:00 – 1:00 pm ET

  1. The National Biomedical Research Act, Beth Pearson, Health and Economic Policy Advisor, Office of Senator Elizabeth Warren (D-MA)
  2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD)
  3. State Medicaid Waivers, Hannah Katch, Senior Policy Analyst, Center on Budget and Policy Priorities
  4. The Children’s Health Insurance Program (CHIP), Carrie Fitzgerald, Vice President, Children’s Health Programs, First Focus
  5. Report on Orphan Drug Costs Relative to Other Classes of Drugs, Steven Grossman, President, HPS Group and Board Member, NORD
  6. Rare Disease Week on Capitol Hill, Sabah Bhatnagar, Program Director, RDLA, EveryLife Foundation for Rare Diseases

11.14.17 Slide Deck

Once a month, RDLA convenes in person and/or over the phone to discuss legislation and developments that affect the rare disease community. The meeting/conference calls are essentially a clearing house for legislation and participation does not imply support for any of the policy proposals or legislation that are discussed or promoted.