Rare Disease Legislative Advocates

 Wednesday, March 15th: 1:00 pm to 2:00 pm EST 

Click ‘register’ below to RSVP and receive the call in number and webinar info:



  1. Capitol Hill Update: Max Bronstein, Chief Advocacy and Science Policy Officer, EveryLife Foundation for Rare Diseases
  2. Newborn Screening in Florida: Vignesh Ganapathy, Associate Director of Advocacy and Government Relations, EveryLife Foundation for Rare Diseases


Agenda is OPEN, please submit possible agenda items to [email protected] 

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.