Wednesday, March 23rd: 1:00 pm to 2:00 pm EST
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.
- National Biomedical Research Act: Remy Brim, Senior Health Policy Advisor to Senator Elizabeth Warren
- S. 2689 REGROW Act: Chelsey Hathaway, Manager of Patient Advocacy & Events, Alliance for Regenerative Medicine
- Newborn Screening & Capitol Hill Update: Max Bronstein, Senior Director of Advocacy and Science Policy, EveryLife Foundation
Agenda is OPEN, please submit possible agenda items to firstname.lastname@example.org
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.