Tue, Nov 14, 2017
12:30 PM - 1:30 PM

RDLA's November Legislative Webinar and In-Person Meeting

 

RDLA's November Legislative Webinar and In-Person Meeting

Tuesday, November 14th: 12:30 pm to 1:30 pm ET 

440 First Street Northwest, Ground Floor Conference Room, Washington, DC 20001

Lunch will be provided.

Agenda

1. The National Biomedical Research Act, Beth Pearson, Health and Economic Policy Advisor, Office of Senator Elizabeth Warren (D-MA)

2. The Orphan Drug Tax Credit, Paul Melmeyer, Director of Federal Policy, National Organization for Rare Disorders (NORD)

3. State Medicaid Waivers, Hannah Katch, Senior Policy Analyst, Center on Budget and Policy Priorities

4. The Children’s Health Insurance Program (CHIP), Carrie Fitzgerald, Vice President, Children’s Health Programs, First Focus 

5. Report on Orphan Drug Costs Relative to Other Classes of Drugs, Steven Grossman, President, HPS Group and Board Member, NORD

6. Rare Disease Week on Capitol Hill, Sabah Bhatnagar, Program Director, RDLA, EveryLife Foundation for Rare Diseases

The agenda is open, if you would like to speak please contact Sabah Bhatnagar at 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, Ground Floor Conference Room, Washington, DC 20001
Washington, DC 20001


The registration deadline for this event has passed.