Wednesday, June 14th, 2017
12:00 – 1:00 pm ET
440 First Street Northwest, Suite 430
Washington, DC 20001
- Latest Update on FDA Hiring Freeze and Funding for FY 18
- Steve Grossman, Deputy Executive Director, Alliance for a Stronger FDA
- Newborn Screening Updates and the Impact of the Presidential Budget
- Rebecca Abbott, Deputy Director of Federal Affairs for Public Health, March of Dimes
- RDLA Program Director Introduction
- Sabah Bhatnagar, RDLA Program Director, EveryLife Foundation
- Orphan Product Extensions Now, Accelerating Cures and Treatments Act (OPEN ACT) and Florida Newborn Screening Legislation
- Max Bronstein, Chief Advocacy and Science Policy Officer, EveryLife Foundation for Rare Diseases
- Upcoming RDLA Events (RARE on the Road and In-District Lobby Days)
- Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases
Agenda is OPEN. Please submit possible agenda items to Hannah (HClauson@everylifefoundation.
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.