North Carolina

Family Empowerment Representatives

Family Empowerment Representatives are volunteers who provide emotional support, information and resources to families affected by Rett syndrome. Contacting them should be your first step.

National Family Empowerment Representative

Samantha Brant – Family & Community Engagement Manager, International Rett Syndrome Foundation
[email protected]  1-913-221-8157

Family Empowerment Representative

Kristin Barton Stephenson, volunteer Family Empowerment Representative, Youngsville, NC
[email protected]    1-919-453-4658

Gwen Noecker,  volunteer Family Empowerment Representative, Raleigh NC  
[email protected]  1-919-426-5554

Caitlin Barbier, volunteer Family Empowerment Representative
[email protected] 1-910-638-8803

Treatment and Research Centers

Your child may be able to participate in studies and trials to advance treatment and knowledge of Rett syndrome. There are clinics specializing in Rett syndrome that can help you provide Rett-specific care for your child.

Clinical Trials

Rett syndrome clinical trials are available at various stages in the process. Please visit our Clinical Trial page for current enrollment status.

The University of North Carolina at Chapel Hill

Clinic Name: Rett Syndrome Clinic
Medical Directors: Yael Shiloh-Malawsky, MD & Diana Cejas, MD, MPH
Clinic Address: 6011 Farrington Road, Suite 101, Chapel, Hill, NC 27517
Clinic Phone: (984) 974-1401 (Ask for Shannon to schedule)
Part of the IRSF Center of Excellence Network

State Agencies & Resources

Local Service Agencies

Care Coordination for Children (CC4C)

Visit Care Coordination for Children (CC4C) Website
CC4C is a program that helps families find and use community services. Children ages birth to 5 who have been diagnosed with developmental delay or disability are eligible.

North Carolina Department of Health and Human Services

Visit North Carolina Department of Health and Human Services Website
The DHHS website provides information about resources for children with Special Needs.

Exceptional Children's Assistance Center (ECAC)

Visit Exceptional Children’s Assistance Center (ECAC) Website
The ECAC supports North Carolina Family Voices. NCFV advocates for health care services that are family centered. They believe that family-centered care is the philosophy of service delivery that best meets the needs of children and their families.

Local Social Services Agency

Visit Local Social Services Agency Website
Each county in North Carolina has a Local Social Services Agency. Select your county to view phone numbers, addresses, and agency web site addresses. The North Carolina Division of Social Services works in cooperation with the Social Services Commission, the Local Social Services Agency and other public and private entities.

The Dream Factory of North Carolina

Visit The Dream Factory of North Carolina Website
The Dream Factory is the largest children’s wish-granting organization that does not limit its mission to children who have life-threatening illness. The organization believes children with chronic illnesses and disorders also suffer from substantial emotional and physical pain.

State Medicaid


Visit Local LME/MCO Website
To learn more about Medicaid services, and to apply for waivers, contact your local management facility/managed care organization (LME/MCO). 1-855-262-1946.

North Carolina Community Alternatives Program for Children (CAP/C)

Visit North Carolina Community Alternatives Program for Children (CAP/C) Website
CAP/C is a Medicaid waiver program for children (the Katie Beckett Waiver) under the age of 20 who are medically fragile and cared for in the home. There is no income requirement. Services offered include in home care, vehicle modifications, home modifications, access to PT, OT and ST. This program is a payer of last resort so if you have private insurance, it must be billed first. To apply, contact your Local Case Management Agency.

Comprehensive Waiver

View Comprehensive Waiver
This waiver is only available in counties where the Innovations Waiver is not available. It provides vehicle modifications, in home modifications, respite, and more services for children beginning at birth, with no maximum age. There is currently a waitlist to obtain services.

Early Intervention

Children's Developmental Services Agency (CDSA)

Visit Children’s Developmental Services Agency (CDSA) Website
North Carolina’s Infant-Toddler Program (NC ITP) provides services for children, birth to 3, with special needs. Contact your local CDSA office.


Department of Exceptional Children

Visit Department of Exceptional Children Website
The Public Schools of North Carolina Department of Exceptional Children ensures that students with disabilities develop intellectually, physically, emotionally, and vocationally through the provision of an appropriate individualized education program in the least restrictive environment.



Visit NCHHS Website
NCHSS provides information on guardianship.

Transition to Adult Services

Local School Districts

View Local School Districts
A listing of local school districts in North Carolina

If you have favorite resources to share with others, please email that information and your experience to [email protected].


North Carolina Therapeutic Riding Center

Visit North Carolina Therapeutic Riding Center Website
Located in Mebane, this is a hippotherapy center that has been helping individuals with disabilities for over 30 years.



Visit Carowinds Website
Carowinds offers a Ride Boarding Pass Program for guests with disabilities that allows them to ride at specific times and avoid long lines.

Tweetsie Railroad

Visit Tweetsie Railroad Website
Tweetsie has accessible park and show venues.

Additional Resources

North Carolina IRSF Facebook Page

Click and ask to join.

Arc of North Carolina

Visit Arc of North Carolina Website
The ARC is committed to securing for all people with intellectual and developmental disabilities the opportunity to choose and realize their goals of where and how they learn, live, work, and play.