WASHINGTON--(BUSINESS WIRE)--The Rare Disease Congressional Caucus, in partnership with the EveryLife Foundation for Rare Diseases and Rare Disease Legislative Advocates, will host a virtual briefing titled, “Economic Burden of Rare Diseases in America: A Public Health Crisis,” on Feb. 25, 2021.
The briefing will focus on results from the groundbreaking National Economic Burden of Rare Disease Study. This comprehensive research uses insurance claim data and a survey of nearly 1,400 members of the rare disease community to examine both direct medical costs such as inpatient hospital care, as well as previously unexamined costs such as lost productivity due to forced early retirement and home modifications required to ensure accessibility.
Topic: |
Economic Burden of Rare Diseases in America: A Public Health Crisis |
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Date: |
Thursday, Feb. 25, 2021 |
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Time: |
1:00pm EST |
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Location: |
Presenters:
- Rep. G.K. Butterfield (NC-1)
- Rep. Gus Bilirakis (FL-12)
- Christopher Austin, MD, National Center for Advancing Translational Sciences (NCATS), National Institutes of Health
- Annie Kennedy, EveryLife Foundation for Rare Diseases
- Elisabeth Oehrlein, National Health Council
- Marissa Penrod, Founder and CEO, Team Joseph, mother of a young man with Duchenne
- 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).
About the EveryLife Foundation and Rare Disease Legislative Advocates
The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. Rare Disease Legislative Advocates (RDLA) is a program of the EveryLife Foundation for Rare Diseases designed to support the advocacy of all rare disease patients and organizations. RDLA believes that every voice matters and that patients are the key to changing public policy.
