NC Rare Disease Coalition

Objectives

  • 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 
http://22q13.org

Leisa Greathouse, Fayetteville
Langerhans Cell Histiocytosis
Member, UNC’s Family Advisory Board and Pediatric Palliative Care Committee 
http://www.histio.org/lchinchildren#.Vsy2YvkrJpg  

Sharon King, Charlotte
Batten Disease
President, Taylor’s Tale 
http://taylorstale.org/

Sarah Kucharski, Charlotte
Fibromuscular Dysplasia
Coordinator, ePatient Programs at Stanford Medicine X and Founder, FMD Chat
http://www.fmdchat.net/

John Rista, Huntersville
Alveolar Capillary Dysplasia
Treasurer, ACD Association 
http://acdassociation.org/

Sandra Talbird, Morrisville
Associate Trustee, cureCADASIL Association 
www.curecadasil.org

Kaytee Thomas, Raleigh
Gastroschisis
Founding Member, Parent Advisory Group, National Birth Defects Prevention Network
Co-Founder, Avery’s Angels 
http://averysangels.org/

Michelle Welborn, PharmaD, Winston Salem
Dravet Syndrome
Founder, ICE-Epilepsy Alliance
http://www.ice-epilepsy.org/