Economic Burden of Rare Disease and Unmet Patient Needs

2:00 PM - 2:45 PM (EDT), Wednesday, June 16, 2021
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Persons living with a rare disease or condition and their caregivers face unique, time-consuming medical challenges on a daily basis and also absorb the direct and hidden indirect cost burden of coping with the disease. A recent landmark study by the EveryLife Foundation for Rare Diseases quantified the total economic burden of rare diseases in a single year, with broad implications for public health and patient access. in this session panelists will discuss the complex issues around rare disease, including the public health impact and recent attempts to undermine access which stem from this lack of understanding, including new scrutiny for rare disease drugs approved via expedited pathways such as Accelerated Approval.

Moderator
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Vice President, Government Affairs and Policy
Travere Therapeutics, Inc.
Speaker
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Chief of Policy and Advocacy
Everylife Foundation For Rare Diseases