Thu, Sep 12, 2019
12:00 PM - 1:00 PM
RDLA September 2019 Legislative Webinar & In-Person Meeting
RDLA September Legislative Webinar and In-Person Meeting
Thursday, September 12th: 12:00 pm to 1:00 pm ET
1012 14th Street Northwest, Suite 500, Washington, DC 20005
Lunch will be provided
1. Access to Genetic Counselor Services Act Update, John Richardson, Director of Policy and Government Relations, National Society of Genetic Counselors
2.Newborn Screening Saves Lives Act Reauthorization Update, Debbie Jessup, Office of Representative Lucille Roybal-Allard
3. Aidan's Law Update, Elisa Seeger, Aidan Jack Seeger Foundation
4. Advancing Access to Precision Medicine Act Update, Adeola Adesina, Office of Representative Eric Swalwell
5 Rare Across America 2019, Shannon von Felden, RDLA Program Manager, EveryLife Foundation for Rare Diseases
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.