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*


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. The Advancing Access to Precision Medicine Act (H.R. 5062), Speaker Invited 

3. Right to Try, Speaker Invited

3. Nominations for the RareVoice Awards, Julia Jenkins, Executive Director, EveryLife Foundation for Rare Diseases 

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

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.

Register for this event