Tara began working in 2009 in the Gene Therapy Center with rare disease researchers and clinicians, which led to her working with patient advocates in rare diseases. In March 2015, she collaborated with a patient advocate to co-write legislation to create an Advisory Council for Rare Diseases in North Carolina and this legislation was signed into law August 2015. Tara serves as Associate Chair of the council to bring together these key opinion leaders in the rare disease community. In 2016, Tara created the NC Rare Disease Innovations Institute, Inc. non-profit.
Tara also works with faculty and clinicians at UNC whose focus is on rare disease.
More information about the council, the network, and the corporate partner’s program can be found at:
More about the NC Rare Disease Innovations Institute (currently in revision)