Thu, Oct 17, 2019
12:00 PM - 1:00 PM
RDLA October 2019 Legislative Webinar & In-Person Meeting
RDLA October Legislative Webinar and In-Person Meeting
Thursday, October 17th: 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, Dylan Simon, EveryLife Foundation for Rare Diseases
3. Rare Disease Burden Study Update, Dylan Simon, EveryLife Foundation for Rare Diseases
4. Ensuring Lasting Smiles Act Update, Becky Abbott, National Foundation for Ectodermal Dysplasias
5. Introduction to the Young Adult Representatives of RDLA, Dan Pezzetta
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 firstname.lastname@example.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.