(a) All members of the council shall be full-time residents of Rhode Island and membership shall include a diverse set of stakeholders. (b) The governor shall appoint all members and shall designate a chair of the council within thirty (30) days of enactment. The chair shall not hold any position within the government of Rhode Island and shall serve for a term of three (3) years. (c) The governor shall appoint the following members: (1) One representative from academic research institutions in the state that receives any grant funding for rare disease research; (2) One representative from the Rhode Island department of health’s office of minority health; (3) One representative from the Rhode Island Medicaid agency; (4) One representative from the Rhode Island department of business regulation insurance division; (5) One registered nurse or advanced practice registered nurse licensed and practicing in Rhode Island with experience treating rare diseases; (6) One physician practicing in Rhode Island with experience treating rare diseases; (7) One hospital administrator, or designee, from a hospital in Rhode Island that provides care to persons diagnosed with a rare disease; (8) At least two (2) patients who have a rare disease; (9) At least one caregiver of a person with a rare disease; (10) One representative of a rare disease patient organization that operates in Rhode Island; (11) A pharmacist with experience dispensing drugs used to treat rare diseases; (12) A representative of the biopharma industry; (13) A representative of a health plan company; and (14) A member of the scientific community who is engaged in rare disease research, including, but not limited to, a medical researcher with experience conducting research on rare diseases.
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