Members of Rare Disease Advisory Council — Meetings — Administrative Attachment

1. Law
2. Tennessee Code
3. Welfare
4. Tennessee Rare Disease Advisory Council
5. Members of Rare Disease Advisory Council — Meetings — Administrative Attachment

1. The advisory council is administratively attached to the bureau of TennCare, and is composed of eleven (11) members as follows:
   1. The governor shall appoint:
      1. One (1) representative from the bureau of TennCare;
      2. Two (2) representatives from academic research institutions in this state that receive grant funding for rare disease research;
      3. Two (2) physicians licensed and practicing in this state with experience in researching, diagnosing, or treating rare diseases;
      4. One (1) geneticist licensed and practicing in this state;
      5. One (1) registered nurse or advanced practice registered nurse with experience treating rare diseases who is licensed and practicing in this state;
      6. One (1) resident of this state who is eighteen (18) years of age or older and who:
         1. Has been diagnosed with a rare disease; or
         2. Is a caregiver for a person who has been diagnosed with a rare disease; and
      7. One (1) representative of a rare disease patient organization operating in this state; and
   2. The speaker of the senate and the speaker of the house of representatives shall each appoint one (1) member to the advisory council.
2. In order to stagger the terms of the newly appointed advisory council members:
   1. The persons appointed under subdivisions (a)(1)(A) and (B) serve initial terms of one (1) year, which expire on June 30, 2021;
   2. The persons appointed under subdivisions (a)(1)(C)-(E) serve initial terms of two (2) years, which expire on June 30, 2022; and
   3. The persons appointed under subdivisions (a)(1)(F), (a)(1)(G), and (a)(2) serve initial terms of three (3) years, which expire on June 30, 2023.
3. 1. Following the expiration of their initial terms, all appointed members of the advisory council serve terms of three (3) years.
   2. Members of the advisory council shall serve until their successors have been appointed, with vacancies to be filled in the same manner as provided in the original appointments.
4. In making appointments to the advisory council, the appointing authorities shall strive to ensure that the advisory council is composed of persons who are diverse in professional or educational background, ethnicity, race, age, sex, geographic residency, heritage, perspective, and experience.
5. The advisory council members receive no compensation for their services on the advisory council.
6. 1. The advisory council shall meet quarterly, and may meet more often as determined by a majority vote of the advisory council. A member may participate in an advisory council meeting by teleconference up to two (2) times each calendar year.
   2. The governor shall call the initial meeting of the advisory council no later than October 1, 2020.
   3. Members shall elect a chair, vice chair, and secretary whose duties are established by the council.
   4. All meetings of the council are at the call of the chair.
   5. The council is administratively attached to TennCare for the purpose of submitting meeting minutes compiled by the council secretary to the DUR and PAC.

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