Wed, Jul 19, 2017
12:00 PM - 1:00 PM

RDLA's July Legislative Webinar & In-Person Meeting

 

RDLA's July Legislative Webinar and In-Person Meeting

Wednesday, July 19th: 12:00 pm to 1:00 pm ET 

440 First Street Northwest, Suite 430, Washington, DC 20001

Lunch will be provided.

Agenda

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), 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 

 

Agenda is OPEN, please submit possible agenda items to sbhatnagar@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.


Event Location

440 First Street Northwest, Suite 430, Washington, DC 20001
Washington D.C. , DC 20001


The registration deadline for this event has passed.