Tennessee Rare Disease Survey
The Tennessee Rare Disease Advisory Council (TN-RDAC) has created this survey to learn more about the needs of individuals, families and loved ones affected by rare diseases in the State of Tennessee. In the United States of America, a rare disease is defined as one that affects fewer than 1 in 200,000 Americans. The survey results will help our efforts to improve the quality of life of all those affected by rare diseases in Tennessee.
PARTICIPATION & TIME COMMITMENT
This survey is intended for persons with a rare disease who reside in Tennessee. If the person with the rare disease is under the age of 18, a parent or legal guardian can complete this survey on behalf of the person with a rare disease. A family member or other advocate may also complete this survey on behalf of the person with a rare disease over age 18.
The questions are generally termed using “you” or “your” but should be understood to be referring to the person with a rare disease.
The survey is expected to take under 10 minutes to complete. If you need to return to a previous page or page ahead, please use the survey navigation buttons at the bottom of your screen. Do not use your browser forward or back buttons. You may choose to skip a question that you prefer not to answer. You may terminate the survey at any time.
BENEFITS & RISKS
You will receive no direct benefits from participating in this survey. However, your responses may help us to learn more about the needs of individuals, families and loved ones affected by rare diseases in the State of Tennessee so that we can make recommendations to improve access to needed resources. There is the risk that you may find some of the questions to be sensitive or may be distressing to you as you think about your experiences.
No identifying information will be gathered for this survey, so your responses are entirely confidential.
If you have further questions or concerns about your rights as a participant in this survey, contact the Tennessee Rare Disease Advisory Council.
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