June 30, 2016
Following a unanimous vote by the N.C. General Assembly, N.C. Governor Pat McCrory signed Taylor’s Law, which renames the legislation that created the N.C. Advisory Council on Rare Diseases in honor of Taylor King.
The original legislation (House Bill 823) passed the N.C. General Assembly unanimously in July 2015 with bipartisan support spearheaded by N.C. Representative Becky Carney (D-Mecklenburg) and N.C. Senator Louis Pate (R-Lenoir, Pitt, Wayne). Sharon King, Taylor’s mother and president of Taylor’s Tale, a rare disease patient advocacy non-profit organization headquartered in Charlotte, originally proposed the legislation. King also serves as a patient advocate on the council.
The N.C. Advisory Council on Rare Diseases is the first of its kind created by a state legislature in the U.S. The council advises the governor and General Assembly on research, diagnosis, treatment and education relating to rare diseases. Located at the School of Medicine at the University of North Carolina-Chapel Hill, the council is composed of representatives of the state’s research universities, healthcare professionals, patient advocates, biotech industry and pharmaceutical companies.
“Taylor King and her family serve as champions for all rare disease patients, and I am very pleased that Taylor’s Law is named in honor of this brave girl,” Carney stated. “Through the leadership of state officials, our universities and business leaders in partnership with patient advocacy groups like Taylor’s Tale, North Carolina is well positioned to develop treatments that will improve the quality of life for rare disease patients and serve as an economic stimulus for our state.”
“We are so grateful to the governor and the members of the General Assembly for naming this historic legislation in honor of Taylor,” King said. “She represents the one million North Carolinians who live with a rare disease, many of which have no effective treatment. The N.C. Advisory Council on Rare Diseases is serving as a model for other states to address the very specific needs of rare disease patients. With North Carolina’s outstanding universities, healthcare systems, biotech industry and pharmaceutical firms, the state is uniquely positioned to serve as a center for rare disease research and the development of treatments.”
The federal government estimates that one in 10 Americans suffers from one of the 7,000 known rare diseases. A disease is considered “rare” in the U.S. if fewer than 200,000 people are affected by it. Worldwide, approximately 350 million people may be affected by a rare disease, although the number is hard to assess due to the difficulty of making accurate diagnoses.
“As a native North Carolinian, I am proud that our state is a leader in providing better lives for rare disease patients, the majority of whom are children and young adults like my daughter. The healthcare and lost revenue costs to society are astronomical, and the emotional cost to families like mine is heartbreaking. With strong bipartisan support and key collaborations across the state, we are making progress dealing with this public health crisis for all of the Taylors in the world,” said King.