Title 23
Health and Safety

CHAPTER 87.1
Rare Disease Advisory Council

§ 23-87.1-3. Membership of council.

(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.