Donate Now

Join RAN

North Carolina

Patricia Sullivan
North Carolina State Ambassador
[email protected]

North Carolina Rare Disease Day Virtual Event

Tuesday, February 23, 2021
12:00pm – 1:30pm EST

North Carolina Rare Action Network invites you to join patients, families, caregivers and other rare disease community members at this important virtual event to educate North Carolina legislators and the general public on the challenges faced by rare disease patients and their families. We will provide an update on the North Carolina Rare Disease Advisory Council (RDAC) and discuss actions you can take to help influence your state’s RDAC efforts.

REGISTER HERE 

COVID-19 Resources & Information

State Resource Page

The North Carolina Department of Health and Human Services has created this helpful resource website in response to COVID-19.

https://www.ncdhhs.gov/divisions/public-health/coronavirus-disease-2019-covid-19-response-north-carolina

What's Happening Now?

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for North Carolina’s Rare Action Network to attend your event? Contact the NORD Rare Action team today and learn more. Please check back regularly for news of upcoming events and activities in North Carolina.

In order to make meaningful change in the lives of rare disease patients and their families in the state of North Carolina, we need you! Become active with the Rare Action Network by joining and utilizing the resources available on this website to take action and create change.

Resources for Families with Rare Diseases in North Carolina

For individuals living with a rare disease, the impact of natural disasters can be detrimental. Together, NORD staff worked with our volunteer advocate, Lydia Rowen to create the Emergency Relief Resources packet, a list of emergency relief resources available for download that may be helpful for rare disease families in the North Carolina area. DOWNLOAD HERE

Duke Undiagnosed Disease Network

The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health Common Fund, made up of medical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases. Through this study, we hope to both help individual patients and families and contribute to the understanding of how the human body works.

Due to the complex nature of the body and the diseases being investigated, we cannot accept all applicants into the study. However, we do fully review all applications we receive. For more information about the UDN and the application process, please visit: dumcudn.org

State Information

Mike Causey, Commissioner

North Carolina Department of Insurance
1201 Mail Service Center
Raleigh, North Carolina 27699-1201

919-733-3058

In order to get the issues that affect your life addressed, connect with your state representative by using the tool on our website.

Click Here

Online Complaint Submission

800-546-5664 (toll free in N.C.) or 919-807-6750

State Health Insurance Consumer Assistance Program

North Carolina Department of Insurance
Health Insurance Smart NC
1201 Mail Service Center
Raleigh, NC 27699-1201

Consumer Assistance Program Contact
877-885-0231 (toll free) 919-807-6860

NORD Links

NORD Logo

Rare Disease Day Logo

Running4Rare Logo