Created by public charter in the 111th Tennessee General Assembly, TN-RDAC first met in October of 2020.

A rare disease is defined as a disease that affects fewer than 200,000 people in the U.S. There are 7,000 known rare diseases affecting approximately 600,000 men, women and children in Tennessee. While the exact causes for many rare diseases remain unknown, 80 percent of rare diseases are genetic in origin and can be linked to mutations in a single gene or in multiple genes.

Persons with rare diseases often face challenges including delays in obtaining a diagnosis, misdiagnosis, shortages of medical specialists who can provide treatment, and lack of access to therapies and medication used to treat rare diseases. Researchers have made considerable progress in developing diagnostic tools and treatment protocols as well as in discovering methods of prevention and treatment, but much more remains to be done in the search for new therapies.

For the 2021 calendar year, TN-RDAC committee members are focused on the following goals:

  • Access to care and medications, including access to insurance,
  • Policy review and/or legislation affecting people with rare diseases,
  • Overall awareness of rare diseases, including surveying patients, advocacy groups, as well as a review of state utilization patterns.