Tennessee

Tennessee Rare Disease Day Virtual Event

Friday, February 26, 2021
12:00pm – 2:00pm CST

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

REGISTER HERE

Terry Jo Bichell
Tennessee State Ambassador
[email protected]

Amber Sapp
Tennessee State Ambassador
[email protected]

Nick Parent
Tennessee Community Engagement Liaison
[email protected]

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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

What's Happening Now?

Please join the Tennessee Rare Action Network for our monthly virtual rare discussion groups. They are held on the last Friday of every month at 10:00am CST. Join rare advocates to discuss challenges rare patients are facing in Connecticut and connect with others. Click here to register for the meeting(s).

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.

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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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.