Georgia Rare Disease Advisory Council (RDAC)

The Georgia Rare Disease Advisory Council: Who We Are, How We Got Here

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Grassroots advocacy began in Georgia in 2014 with annual Rare Disease Day events at the state capitol coordinated by Beth Nguyen; a registered nurse living with more than one complex rare disease. Georgia became one of the first states to advocate for a Rare Disease Advisory Council.

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In 2021 and 2022, a passionate group of advocates called for formal legislation to create the RDAC, recognizing inequities in the health system for rare disease patients. The bill, endorsed by patient groups, hospitals, and medical associations, became law in May 2022, signed by Governor Brian Kemp.

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Rare STRIDES’ and Rare Wish’ Founder Beth Nguyen is the elected Chairperson of Georgia’s Rare Disease Advisory Council. Her personal passion is to make rare visible in all aspects of healthcare to help restore hope, close gaps, and improve the quality of life for children and adults impacted by rare diseases worldwide.