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Rare Disease Legislative Advocates
Powered by the Everylife Foundation
Thursday, April 23, 2020
The April RDLA Legislative Webinar will be a webinar only. We will not be meeting in person in DC in April.
1. Update on the EveryLife Community Congress ad hoc COVID-19 Response Working Group, Wendy Erler, Alexion and Steve Silvestri, EveryLife Foundation
2. Newborn Screening Saves Lives Act, Dylan Simon, EveryLife Foundation for Rare Diseases
3.. Medical Nutrition Equity Act, Kylie Barber, National PKU Alliance
4. Lymphedema Treatment Act, Patricia Egan
5. Ensuring Lasting Smiles Act, Becky Abbott, National Foundation for Ectodermal Dysplasias
6. Rare Across America, Shannon von Felden, RDLA, EveryLife Foundation
The agenda is open. If you would like to speak or have a topic presented on please contact Shannon at email@example.com.
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.
This event has ended.
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This platform is made possible through a partnership with the Sickle Cell Disease Association of America, Inc. (SCDAA) and its member organizations. SCDAA's mission is to advocate for people affected by sickle cell conditions and empower community-based organizations to maximize quality of life and raise public consciousness while advancing the search for a universal cure.