Unmet Needs and New Research on Burden of Rare Disease

2:00 PM - 2:45 PM (EDT), Wednesday, June 16, 2021
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People living with a rare disease or condition not only face unique medical challenges in living with the disease, but also the direct and indirect cost burden of coping with it. These factors are outlined in a recent report by EveryLife Foundation for Rare Diseases, which quantified the total economic burden of rare diseases in a single year – and clearly demonstrates the public health impact of rare diseases. Panelists will discuss the complex issues around rare disease, including rare disease therapies and solutions to ensure patients have access to them.

Sponsored By
Moderator
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Vice President, Government Affairs and Policy
Travere Therapeutics, Inc.
Speakers
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Co-Founder
EGFR Resisters
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Patient Advocate
Heartland Dental
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Assistant Director of Patient Advocacy
NephCure Kidney International
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Chief of Policy and Advocacy
EveryLife Foundation for Rare Diseases
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Vice President, Government Affairs and Policy
Travere Therapeutics, Inc.
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Strategic Director, NEWDIGS
Massachusetts Institute of Technology