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What's Happening Now?

Please join Kentucky Rare Action Network on Thursday, February 27, 2020 at the Kentucky State Capitol, 700 Capitol Avenue, Frankfort, KY. Join patients, families, caregivers, medical professionals, industry representatives and state legislators at this important event to discuss the challenges rare disease patients face and learn how you can make a difference in the lives of rare disease patients and their families here in our great state.


Patrick Dunegan
Kentucky State Co-Ambassador
[email protected]

Jennifer Dunegan
Kentucky State Co-Ambassador
[email protected]

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

On March 19, 2019 Governor Bevin signed into law SB16 An Act establishing
the Kentucky Rare Disease Advisory Council 
How the Kentucky Rare Disease Advisory Council Will Work 
The Kentucky Rare Disease Advisory Council will be administered by an existing nonprofit in the state to advise on rare diseases.
Specific Duties of the Council:
  • Act as an advisory body to the legislature and relevant state and private agencies that provide services to individuals with rare diseases
  • Coordinate with other community-based organizations and private sector institutions
  • Research and determine the most appropriate methods to collect and complete information on rare diseases in the state
  • Identify best practices from other states and the national level
  • Develop effective strategies to raise public awareness of rare diseases
  • Develop a list of publicly accessible resources on research, diagnosis, treatment, and education relating to rare diseases
  • Report biannually on the councils activities, findings, and recommendations

In order to make meaningful change in the lives of rare disease patients and their families in the state of Kentucky, 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.

State Report Card

In this fifth edition of NORD’s “State of the States Report,” we analyze all 50 states and Washington, D.C., on eight issues that impact the rare disease community. Each state has their own individual report card (as seen below), but for more background and an explanation of the grading methodology, please download the full report.

State Information

Nancy G. Atkins, Commissioner

Kentucky Department of Insurance
PO Box 517
Frankfort, Kentucky 40602-0517


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

800-595-6053 (KY only)
or 502-564-6034
Email for Assistance: [email protected] or [email protected]

State Health Insurance Consumer Assistance Program

Brian K. Staples, Health Insurance Advocate/Ombudsman
P.O. Box 517
Frankfort, KY 40602

Ombudsman Email: [email protected]
Ombudsman Website

NORD Links


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