(1)The appointing authorities shall
conduct the appointment process in a transparent manner to provide interested
individuals an opportunity to apply for membership on the council. All members of
the council must be full-time residents of Colorado.
(2)(a) The council consists of twelve voting members appointed as follows:
(I)The president of the senate shall appoint three members, including:
(A)One representative from academic research in the state who receives
grant funding for rare disease research;
(B)One geneticist practicing in Colorado; and
(C)One physician licensed and practicing in Colorado with experience
treating rare diseases;
(II)The minority leader of the senate shall appoint three members, including:
(A)One registered nurse or advanced practice registered
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(1) The appointing authorities shall
conduct the appointment process in a transparent manner to provide interested
individuals an opportunity to apply for membership on the council. All members of
the council must be full-time residents of Colorado.
(2) (a) The council consists of twelve voting members appointed as follows:
(I) The president of the senate shall appoint three members, including:
(A) One representative from academic research in the state who receives
grant funding for rare disease research;
(B) One geneticist practicing in Colorado; and
(C) One physician licensed and practicing in Colorado with experience
treating rare diseases;
(II) The minority leader of the senate shall appoint three members, including:
(A) One registered nurse or advanced practice registered nurse licensed and
practicing in Colorado with experience treating rare diseases;
(B) One pharmacist with experience dispensing drugs used to treat rare
diseases; and
(C) One person who has a rare disease;
(III) The speaker of the house of representatives shall appoint three
members, including:
(A) One representative of a rare disease patient organization operating in
Colorado that is not affiliated with the facilitator;
(B) One representative of the biotechnology or pharmaceutical industry; and
(C) One representative of a health insurer; and
(IV) The minority leader of the house of representatives shall appoint three
members, including:
(A) One person who has a rare disease;
(B) One parent whose child or children have been diagnosed with a rare
disease; and
(C) One caregiver of a person with a rare disease.
(b) The director of the office of health equity, created in section 25-4-2204,
or the director's designee, shall serve as an ex officio, nonvoting member of the
council.
(3) (a) The appointing authorities shall make their initial appointments to the
council by October 1, 2022. In making appointments, to the extent practicable, the
appointing authorities shall consider gender, ethnicity, geographic diversity, and
other considerations that will result in a diverse and inclusive council.
(b) Each member who is appointed pursuant to subsection (2)(a) of this
section serves at the pleasure of the official who appointed the member. Any
vacancy in membership is filled by the appointing authority.
(c) Members shall serve three-year terms; except that, in order to provide
continuity and knowledge transfer among council members, during the initial
appointments to the council and for any members appointed in the first five years
after the council is established, members may serve initial terms of up to four years.
(4) (a) Members of the council serve without compensation and without
reimbursement for expenses incurred by the members in serving on the council or
participating in council activities.
(b) Notwithstanding subsection (4)(a) of this section, a council member may
be reimbursed for actual and necessary expenses relating to the council's duties to
the extent that the council receives gifts, grants, or donations to cover the cost of
reimbursement.