Brenda Nielsen, RN, nurse in the UNC Comprehensive Hemophilia Diagnostic and Treatment Center, will serve a three-year term on this council beginning December 1, 2015 through November 30, 2018.
This year North Carolina lawmakers passed a bill that formed an Advisory Council on Rare Disease, House Bill 823, which is housed in the UNC School of Medicine. The council will give guidance to the Governor, the Secretary, and the General Assembly on research, diagnosis, treatment and education related to rare disease. The council consists of rare disease advocates including providers, researchers and patients. The recommendations of appointments to the council have been approved by Richard Brajer, Secretary of North Carolina Department of Health and Human Services (DHHS).
The following people will serve an initial three-year term on this council beginning Dec. 1, 2015, through Nov. 30, 2018. Dr. Bruce Cairns, MD, John Stackhouse Distinguished Professor of Surgery, Director of the North Carolina Jaycee Burn Center, UNC School of Medicine, serves as Chair of the Council. Rufus Edmisten, former NC Attorney General and Secretary of State, serves as a rare disease survivor. Sharon King, Founder of Taylor’s Tale Foundation, Chair of NC Rare Disease Coalition, serves as the patient advocate. Other Council members include Dr. Vandana Shashi, MD, Professor of Pediatrics, Genetics, Duke University Medical Center; Dr. Mike Knowles, MD, Professor of Medicine, Cystic Fibrosis, UNC School of Medicine; Dr. Jude Samulski, PhD, Professor of Pharmacology, Director of the UNC Gene Therapy Center, UNC School of Medicine; and Brenda Nielsen, RN, UNC Comprehensive Hemophilia Diagnostic and Treatment Center, UNC School of Medicine.
Dr. Randall Williams, Deputy Secretary of Health and Human Services, State Health Director, serves as the ex-officio member.
“The members of the Rare Disease Advisory Council are grateful to Secretary Brajer and the State of North Carolina and are honored to be asked to serve on the Council on behalf of the people of North Carolina,” said Dr. Bruce Cairns, Chair of the Council. “One in 10 – over a million North Carolinians – suffers from one of at least 7,000 rare diseases. We are confident we have assembled an outstanding team that can begin the process of transforming how these devastating conditions are diagnosed and treated. More importantly, we are convinced that working together we will be able to improve the lives of countless citizens of our state.”
“North Carolina is privileged to have nominees of such incredible caliber to serve on the Advisory Council to provide important and necessary guidance to the Governor, the Department and the General Assembly on rare disease research, diagnosis, treatment and education,” commented Secretary Brajer.
Tara Britt, UNC School of Medicine, serves as Associate Chair for the council and facilitates the activities of this council. For more information regarding this council, please contact Tara Britt at firstname.lastname@example.org.