RDLA April 2020 Legislative Webinar

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RDLA April 2020 Legislative Webinar

April 23, 2020 at 12:00 pm EST

**The April RDLA Webinar will be a webinar only. We will not meet in person this month.**


1. Update on the EveryLife Community Congress ad hoc COVID-19 Response Working Group, Wendy Erler, Alexion and Steve Silvestri, EveryLife Foundation for Rare Diseases

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, Pat Egan

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

6. Rare Across America, Shannon von Felden, RDLA, EveryLife Foundation for Rare Diseases

If you would like to present or have a topic presented on a future webinar, please contact Shannon at svonfelden@everylifefoundation.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.

Thank you to the sponsors of the April RDLA webinar:

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Apr 23 2020

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