Over 10,000 rare diseases are currently affecting more than 30 million Americans. This article, written in partnership with members of the Rare Disease Compliance Consortium, focuses on the role of Patient Advocacy Organizations (“PAOs”) and patient advocates as critical stakeholders in the experience of people affected by rare diseases. PAOs engage in a variety of activities related to the awareness and treatment of medical conditions, with the goal of taking actions to help patients affected by those medical conditions, their families, and caregivers.
Originally published in Healthcare Business Today, July 2024.
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