(1) The task force shall be composed of members representing a broad range of professional expertise and lived experience, including, but not limited to:(a) Licensed clinicians with experience diagnosing or treating rare diseases;(b) Medical or scientific researchers specializing in rare diseases;(c) Individuals diagnosed with a rare disease;(d) Family members or caregivers of individuals with rare diseases;(e) Representatives of rare disease patient advocacy organizations; and(f) Policymakers or designees with expertise in public health, insurance regulation or health finance.
(a) Licensed clinicians with experience diagnosing or treating rare diseases;
(b) Medical or scientific researchers specializing in rare diseases;
(c) Individuals diagnosed with a rare disease;
(d) Family members or caregivers of individuals with rare diseases;
(e) Representatives of rare disease patient advocacy organizations; and
(f) Policymakers or designees with expertise in public health, insurance regulation or health finance.
(2) The task force shall consist of seven (7) members. The members of the task force shall be appointed as follows: One (1) member appointed by the Lieutenant Governor; one (1) member appointed by the Speaker of the House of Representatives; and three (3) members appointed by the Governor; all in accordance with procedures established by the council and consistent with state law. The council shall appoint one (1) member who is actively employed in the insurance industry at the time of appointment. The chairman of the council shall also be the chair of the task force.
(3) Members shall serve without compensation, but may be reimbursed for actual and necessary expenses, subject to the availability of funds.