Rare Disease Legislative Advocates July Legislative Webinar and In-Person Meeting | Friends of Cancer Research

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Rare Disease Legislative Advocates July Legislative Webinar and In-Person Meeting

  1. Update on Healthcare Reform and ACA Replacement, Joel White, Founder and President, Horizon Government Affairs
  2. Reagan-Udall Foundation’s Expanded Access Navigator, June Wasser, Executive Director, Reagan-Udall Foundation
  3. The Food and Drug Administration Reauthorization Act (FDARA) Update, Ryan Hohman, Vice President, Public Affairs, Friends of Cancer Research
  4. Funding for Research Programs in the FY18 Budget, Sara Chang, Director of Policy and Advocacy, Research!America
  5. Orphan Product Extensions Now, Accelerating Cures and Treatments Act (OPEN ACT), Stephanie Fischer, Senior Director of Patient Engagement and Communications, EveryLife Foundation for Rare Diseases
  6. Upcoming Events (In-District Lobby Days and RareVoice Award Nominations), Stephanie Fischer, Senior Director of Patient Engagement and Communications, EveryLife Foundation for Rare Diseases

 

To view the slide deck from the meeting, click here.

 

To watch the webinar, click here

 

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.

Date: 
Wednesday, July 19, 2017 -
12:00pm to 1:00pm
Event Type: