The Georgia Rare Disease Advisory Council: Who We Are, How We Got Here
Grassroots advocacy began in Georgia in 2014 with annual Rare Disease Day events at the state Capital, coordinate by a registered nurse living with a rare disease. Georgia became one of the first states to advocate for a Rare Disease Advisory Council.
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.
Georgia Life Sciences’ CEO, Maria Thacker Goethe, has been a leading advocate and council member for RDAC.
