Sharon King

Patient Advocate and State-appointed Member of the North Carolina Advisory Council on Rare Diseases

Sharon is a passionate patient advocate and rare disease thought reader who has united public officials, researchers, biotech and industry representatives, and patient advocates to catalyze rare disease treatment development and critical public policies. Using her experience from more than two decades of community service, Sharon co-founded and serves as president of Taylor’s Tale, the organization named for her late daughter to drive progress for CLN1 disease (Batten disease) research and advocate for the needs of rare disease patients. Together with other dedicated volunteers, she helped build a grassroots organization into a leading force against rare disease.

Sharon is a state-appointed member of the North Carolina Advisory Council on Rare Diseases. The law that established the Council – the nation’s first – is named for her daughter.