Wed, Mar 21, 2018
12:00 PM - 1:00 PM

RDLA's March Legislative Webinar

  

RDLA's March Legislative Webinar 

Wednesday, March 21st: 12:00 pm to 1:00 pm ET 

*Remote only*

Agenda

1. The Rare Disease Advancement, Research, and Education Act (RARE Act) of 2018 (H.R. 5115), Charlie Arnowitz, Legislative Assistant, Office of Rep. André Carson 

2. Emergency Medical Protocols, Darlene Shelton, Founder/President, Danny’s Dose Alliance, Inc

3. Right to Try, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD)

4. Rare On The Road, Rare Disease Leadership Tour, Lisa Schill, Event Development Consultant, EveryLife Foundation for Rare Diseases

5.  Nominations for the 2018 RareVoice Awards, In District Lobby Days, Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases 

The agenda is open. If you would like to speak, please contact Julia Jenkins at JJenkins@everylifefoundation.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.

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.



The registration deadline for this event has passed.