State law honors Charlotte girl with rare disease

Following a unanimous vote by the N.C. legislature, Gov. Pat McCrory has signed Taylor’s Law, renaming the 2015 legislation that created the N.C. Advisory Council on Rare Diseases. The new name honors Taylor King, 17, of Charlotte who suffers from infantile Batten disease, a rare neurological disease.

The advisory council advises the governor and General Assembly on research, diagnosis, treatment and education relating to rare diseases. It’s based at UNC-Chapel Hill School of Medicine and includes representatives from the state’s research universities, biotechnology and pharmaceutical companies as well as healthcare professionals and patient advocates.

The original legislation passed in July 2015 with bipartisan support spearheaded by N.C. Rep. Becky Carney (D-Mecklenburg) and N.C. Sen. Louis Pate (R-Lenoir, Pitt, Wayne). It was proposed by Sharon King, Taylor’s mother and president of Taylor’s Tale, a rare disease patient advocacy group based in Charlotte. Details: www.taylorstale.org.

This story was originally published July 1, 2016 at 5:27 PM with the headline "State law honors Charlotte girl with rare disease."