NC Rare Disease Coalition


  • Assist the North Carolina Advisory Council on Rare Diseases in identifying issues of importance to the rare disease community that can be addressed through public policy.
  • Serve as a conduit for communication and advocacy on behalf of rare disease stakeholders.
  • Ensure rare disease is a public health priority.

Leadership Team

  • Sharon King, Chair

Van Daughtry, Raleigh
Phelan-McDermid Syndrome
Trustee, Phelan-McDermid Syndrome Foundation

Leisa Greathouse, Fayetteville
Langerhans Cell Histiocytosis
Member, UNC’s Family Advisory Board and Pediatric Palliative Care Committee

Sharon King, Charlotte
Batten Disease
President, Taylor’s Tale

Sarah Kucharski, Charlotte
Fibromuscular Dysplasia
Coordinator, ePatient Programs at Stanford Medicine X and Founder, FMD Chat

John Rista, Huntersville
Alveolar Capillary Dysplasia
Treasurer, ACD Association

Sandra Talbird, Morrisville
Associate Trustee, cureCADASIL Association

Kaytee Thomas, Raleigh
Founding Member, Parent Advisory Group, National Birth Defects Prevention Network
Co-Founder, Avery’s Angels

Michelle WelbornPharmaD, Winston Salem
Dravet Syndrome
Founder, ICE-Epilepsy Alliance