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

RDLA November 2019 Legislative Webinar & In-Person Meeting


RDLA November Legislative Webinar and In-Person Meeting
Thursday, November 21st: 12:00 pm to 1:00 pm ET 
 1012 14th Street Northwest, Suite 500, Washington, DC 20005
Lunch will be provided


1. Medical Nutrition Equity Act Update, Kylie Barber, National PKU Alliance

2. Newborn Screening Saves Lives Reauthorization Act Update, Steve Silvestri, EveryLife Foundation for Rare Diseases

3. Overview of CLSA Commissioned Study, California Life Science Association 

4. Ensuring Lasting Smiles Act Update, Becky Abbott, National Foundation for Ectodermal Dysplasias

5. Lymphedema Treatment Act Update, Patricia Egan

6. Rare Disease Week on Capitol Hill 2020, Shannon von Felden, Rare Disease Legislative Advocates

The agenda is open. If you would like to speak or have a topic presented on please contact Shannon 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