Rare diseases to take center stage at special NC General Assembly event

At a special all-day event June 7, The NC Rare Disease Advisory Council will offer clinicians, researchers, patients, and advocates a voice on rare diseases in North Carolina.

CHAPEL HILL, NC – The NC Rare Disease Advisory Council and the NC Rare Disease Coalition are sponsoring a legislative event on June 7 from 9 a.m. to 5 p.m. in the 1100 courtyard of the NC General Assembly Legislative Complex to advocate for health care workers, researchers, and especially families and individuals affected by rare diseases. Also, the council and coalition will official thank North Carolina legislators for passing House Bill 823, which established the advisory council in 2015.

Clinicians, researchers, nurses, health care staff, and others in various medical fields who would like to participate and bring further attention and awareness to specific rare diseases must register for the event no later than May 25. Registration is required.

“This legislative day will allow us to thank our state leaders as well as discuss innovative strategies that will help us improve the diagnosis and treatment of the more than 7,000 rare diseases that affect over 1 million people in North Carolina alone,” said Bruce Cairns, MD, chair of the Rare Disease Advisory Council, director of the North Carolina Jaycee Burn Center, and the John Stackhouse Distinguished Professor of Surgery at the UNC School of Medicine.

The council hopes for strong representation from rare disease patients and their families, patient advocacy groups, the pharmaceutical industry, and biotech companies. Tables will be provided in order for participants to display and hand out materials to the public and legislators. 

More information can be found here.

The NC Rare Disease Advisory Council provides expert guidance to the governor, the secretary of the NC Department of Health and Human Services, and the NC General Assembly on research, diagnosis, treatment, and education related to rare diseases. The council consists of clinicians, researchers, a nurse, a rare disease survivor, and a rare disease advocate.

Contact: Tara J. Britt, 919-417-6130, tjbritt@unc.edu.

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