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/
North Carolina Rare Disease Network 