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.
What's Happening Now?
Would 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.
- 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.
Nancy G. Atkins, Commissioner
Kentucky Department of Insurance
PO Box 517
Frankfort, Kentucky 40602-0517
State Health Insurance Consumer Assistance Program
Brian K. Staples, Health Insurance Advocate/Ombudsman
P.O. Box 517
Frankfort, KY 40602