Tennessee

What's Happening Now?

Please join NORD’s Tennessee Rare Action Network (RAN) for our upcoming Virtual Rare Discussion Group to exchange stories and experiences of living with or caring for someone with a rare disease, including those experiences related to the COVID-19 pandemic. Come ready to share your concerns, ask questions, and hear updates from NORD. These meetings are open to all – you do not have to be a RAN member.

Friday, August 6, 2021 at 11:30am CST
Friday, September 3, 2021 at 11:30am CST
Friday, October 1, 2021 at 11:30am CST
Friday, November 5, 2021 at 11:30am CST
Friday, December 3, 2021 at 11:30am CST

Click Here to Register for the Virtual Rare Discussion Groups

Terry Jo Bichell
Tennessee Volunteer State Ambassador
[email protected]

Nick Parent
Tennessee Volunteer State Ambassador
[email protected]

Follow Tennessee RAN on Facebook

Would you like to volunteer to assist in hosting a local community awareness event? Do you have an opportunity for Tennessee’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 Tennessee.

COVID-19 Resources & Information

State Resource Page

The state of Tennessee has created this helpful resource website in response to COVID-19.

https://www.tn.gov/governor/covid-19.html

Check out the Tennessee Rare Disease Day Virtual Event Recording

Tennessee Rare Action Network hosted a Rare Disease Day Virtual Event on February 26, 2021. We were joined by patients, families, caregivers and other rare disease community members at this important virtual event that educated Tennessee legislators and the general public on the challenges faced by rare disease patients and their families.

CLICK HERE FOR THE RECORDING

Vanderbilt 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: https://ww2.mc.vanderbilt.edu/undiagnosed/

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

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