Wednesday, October 26th: 1:00 pm to 2:00 pm EST 
Click ‘register’ below to RSVP and receive the call in number and webinar info:



  1. Newborn Screening & the CDC: Cheryl Jaeger, Principal, Williams & Jensen
  2. 340B Drug Pricing Program: Michele Oshman, Director of Federal Advocacy and Alliance Development, Eli Lilly
  3. Lymphedema Treatment Act:Patricia Egan, Interim Executive Director & CEO, National Lymphedema Network
  4. Newborn Screening in California: Vignesh Ganapathy, Manager of Advocacy and Government Relations, EveryLife Foundation
  5. Capitol Hill Update: Max Bronstein, Senior Director of Advocacy and Science Policy, EveryLife Foundation


Agenda is OPEN, please submit possible agenda items to

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.