Thu, Mar 21, 2019
12:00 PM - 1:00 PM

RDLA March 2019 Legislative Webinar & In-Person Meeting

   

RDLA March Legislative Webinar and In-Person Meeting

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

 1012 14th Street Northwest, Suite 500, Washington, DC 20005

Lunch will be provided


Agenda

1. FDA Meeting on Patient Perspectives on the Impact of Rare Diseases: Bridging the Commonalities, Dr. Janet Maynard, Acting Director, Office of Orphan Products Development, FDA

2. Rare Disease Burden Study Update, Deanna Portero, Executive Director, Fibrous Dysplasia Foundation

3. President's Budget for FY 2020

4. Lymphedema Treatment Act Update, Heather Ferguson, Executive Director, Lymphedema Advocacy Group

5. Medical Nutrition Equity Act, Camille Bonta, Summit Health Care Consulting
6. Rare Disease Week on Capitol Hill Review, Shannon von Felden, Program Manager, RDLA, EveryLife Foundation


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.



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