Taylor’s Tale, a Charlotte-based advocacy group in the fight against Batten disease and other rare diseases, spearheaded new legislation in North Carolina to create a new advisory council housed within the UNC-Chapel Hill School of Medicine to work towards finding more treatments for rare diseases.
North Carolina House Bill 823 will establish the council that will give guidance on research, diagnosis, treatment and education related to rare diseases. The council will consist of rare disease advocates including providers, researchers and patients.
In short, the council is directed by the state to, “Advise on coordinating statewide efforts for the study of the incidence of rare diseases within the State and the status of the rare disease community.”
It can be hard to find a specialist who knows how to treat your rare disease. Disease advocacy groups, rare disease organizations and genetics clinics may help you to find one. A partnership between advocacy groups including Taylor’s Tale, academic medical centers, the National Institutes of Health and others keenly interested in the diagnosis and treatment of rare diseases can be a model for the nation as they tackle some of the most challenging diseases affecting our citizens. To learn more visit taylorstale.org
(Left) Sharon King and Representative Marilyn Avila, who was one of the bill’s main sponsors.