June 9, 2016
Sharon King, president of Taylor’s Tale, delivered a keynote address during North Carolina’s first Rare Disease Legislative Day on June 7. As she expressed her thanks for the General Assembly’s unanimous passage in 2015 of the legislation that created the N.C. Advisory Council on Rare Diseases, King shared the 10-year journey of her daughter, Taylor, who is battling the devastating effects of Batten disease.
The legislation was renamed “Taylor’s Law” in June 2016. “What a wonderful legacy for my sweet, sweet Taylor,” King said. Following her remarks, King received a standing ovation from the audience for her advocacy on behalf of all rare disease patients and their families and caregivers.
Promoting the theme, “Rare Disease Day is Every Day,” the legislative day was hosted at the N.C. General Assembly Legislative Complex in Raleigh, North Carolina, by the N.C. Advisory Council on Rare Diseases and the N.C. Rare Disease Coalition. North Carolina’s leadership as a healthcare and biotech innovation center was spotlighted during the event, which also served to thank North Carolina’s elected officials for their support for the rare disease community. King and other Taylor’s Tale representatives, state officials and rare disease advocates explored opportunities to improve the quality of life for rare disease patients through public policy and the development of treatments.