EveryLife Foundation for Rare Diseases: February Rare Disease Caucus Virtual Briefing



10:00am - 11:00am

Rare Disease Legislative Advocates in cooperation with the Rare Disease Congressional Caucus invite you to a Rare Disease virtual briefing:

Economic Burden of Rare Diseases in America: A Public Health Crisis
Thursday, February 25th at 10:00 am PST/ 1:00 pm EST

– Congressman G. K. Butterfield (NC-1)
– Congressman Gus Bilirakis (FL-12)
– Christopher Austin, MD, National Center for Advancing Translational Sciences (NCATS), NIH
– Annie Kennedy, EveryLife Foundation for Rare Diseases
– Elisabeth Oehrlein, National Health Council
– Esther Krofah, Milken Institute, Faster Cures (moderator)

About the Rare Disease Congressional Caucus
The Rare Disease Congressional Caucus, a bipartisan, bicameral caucus, provides a platform to educate and engage Members of Congress on policy issues impacting the rare disease community and gives rare disease patients a voice on Capitol Hill. The caucus is led by the co-chairs, Representatives G. K. Butterfield (NC) and Gus Bilirakis (FL) and Senators Roger Wicker (MS) and Amy Klobuchar (MN).

If you have any questions about the briefing, please contact Shannon von Felden, RDLA Program Director, at

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Contact: Elissa Taylor
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