North Carolina Seeks Leadership Role in Combating Rare Diseases

Sharon King, a rare disease advocate in North Carolina, saw an opportunity to accelerate the development of new therapies for patients while forging a leadership role for the state in the area of rare diseases. King, president of Taylor’s Tale, helped craft legislation that created an advisory council on rare diseases to provide guidance on research, diagnosis, treatment and education. We spoke to King and Tara Britt, associate director of the newly created North Carolina Rare Disease Advisory Council, about the development of the legislation, how it seeks to leverage the strong academic and biotechnology assets already in the state, and whether it represents a model that can be replicated elsewhere.