RDLA’s May Webinar/Conference Call

Wednesday, May 21, 2014 

Click here to listen and view a recording of the call


  • 21st Century Cures –  John Stone, House Energy and Commerce Committee Staff
  • Ask Your Candidates! – Tim Tassa, Research!America
  • Right to Try, state-level legislation – Jann Bellamey, Science-Based Medicine
  • Report: The Cost of Prescriptions under the ACA – Matt Grabowski, PhRMA
  • The Open Act – Julia Jenkins, The EveryLife Foundation for Rare Diseases
  • Tribute to Champions of Hope – Carrie Ostrea, Global Genes
 The agenda for the next RDLA meeting is open, please submit agenda items to: arussell@everylifefoundation.org
Updates from RDLA:
  • Like us on Facebook and follow us on Twitter to view the latest news and action alerts on legislation affecting patients with rare diseases.
  • Click here to view presentations from this year’s Legislative Conference
Mark your Calendars!
  • June 18th RDLA Conference Call
  • November 13th – RareVoice Awards Gala