RDLA’s June Legislative Webinar and In-Person Meeting
Wednesday, June 14th: 12:00 pm to 1:00 pm ET
440 First Street Northwest, Suite 430, Washington, DC 20001

Agenda

  1. RDLA Program Director Introduction, Sabah Bhatnagar, RDLA Program Director, The EveryLife Foundation
  2. Latest Update on FDA Hiring Freeze and Funding for FY 18,Steve Grossman, Deputy Executive Director, Alliance for a Stronger FDA 
  3. Budgetary Threats to Federal Newborn Screening Programs, Rebecca Abbott, Deputy Director of Federal Affairs for Public Health,March of Dimes
  4. Introduction to the California Rare Disease Caucus, Angela Ramirez Holmes, President, CalRare
  5. Better Empowerment Now to Enhance Framework and Improve Treatments (BENEFIT) Act, Annie Kennedy, Senior Vice President of Legislation & Public Policy, Parent Project Muscular Dystrophy
  6. The Sarah Grace-Farley-Kluger Parental Bereavement Act, Lynnette Lowrimore, Retired Air Force Officer and Advocate
  7. Emergency Medication Protocols: Missouri EMS Legislation, Darlene Shelton, Founder/President, Danny Dose
  8. Orphan Product Extensions Now, Accelerating Cures and Treatments Act (OPEN ACT) and Florida Newborn Screening Legislation, Max Bronstein, Chief Advocacy & Science Policy Officer, EveryLife Foundation for Rare Diseases 
  9. Upcoming Events (In-District Lobby Days and RareVoice Nominations), Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases

6.14.17 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.

These meetings help facilitate open dialog about legislation that affects the rare disease community. They are open to the public and the media. We ask that media formally announce their participation and refrain from quoting any of the discussion during the meeting. We encourage media to follow up with participants after the meeting for direct quotes.