(a)There is hereby established the Georgia Rare Disease Advisory Council within the department.
(b)The advisory council shall be composed of 16 members as follows:
(1)The following members appointed by the Governor:
(A)A chairperson, who shall not be a state employee;
(B)One representative from an academic research institution in the state that receives grant funding for rare disease research;
(C)One representative from the Division of Medical Assistance Plans of the Department of Community Health;
(D)One representative from the Division of Family and Children Services of the Department of Human Services;
(E)One representative from the Department of Public Health; and (F) One geneticist licensed and practicing in Georgia;
(2)The following members appointed by the Speaker of the Ho
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(a) There is hereby established the Georgia Rare Disease Advisory Council within the department. (b) The advisory council shall be composed of 16 members as follows: (1) The following members appointed by the Governor: (A) A chairperson, who shall not be a state employee; (B) One representative from an academic research institution in the state that receives grant funding for rare disease research; (C) One representative from the Division of Medical Assistance Plans of the Department of Community Health; (D) One representative from the Division of Family and Children Services of the Department of Human Services; (E) One representative from the Department of Public Health; and (F) One geneticist licensed and practicing in Georgia; (2) The following members appointed by the Speaker of the House of Representatives: (A) One registered nurse or advanced practice registered nurse licensed and practicing in Georgia with experience treating rare diseases; (B) One physician practicing in Georgia with experience treating rare diseases; (C) One pediatric specialist trained in the care of children with rare disease; (D) One patient who has a rare disease; and (E) One caregiver of a person with a rare disease; and (3) The following members appointed by the Lieutenant Governor: (A) One patient who has a rare disease; (B) One representative of a rare disease patient organization that operates in Georgia; (C) One representative from the biopharma industry; (D) One representative from a health plan company; and (E) One licensed social worker practicing in Georgia with experience working with rare disease patients. (c) All members of the advisory council shall be full-time residents of Georgia. (d) The advisory council shall meet upon the call of the chairperson and shall meet no less than quarterly, either in person or via virtual means. The advisory council shall provide opportunities for the public to provide input. (e) Members of the advisory council shall receive no compensation for their services but shall be allowed actual and necessary expenses in the performance of their duties. Any legislative members of the advisory council shall receive the allowances provided for in Code Section 28-1-8 . Citizen members shall receive a daily expense allowance in the amount specified in subsection (b) of Code Section 45-7-21 , as well as the mileage or transportation allowance authorized for state employees. Members who are state officials or state employees shall receive no compensation for their services on the advisory council but shall be reimbursed for expenses incurred in the performance of their duties as members of the advisory council in the same manner as reimbursements are made in their capacity as state officials or state employees. The funds necessary for the reimbursement of the expenses of state officials, other than legislative members, and state employees shall come from funds appropriated to or otherwise available to their respective departments.