                                 CODE OF VIRGINIA

MEMBERSHIP; TERMS; QUORUM; MEETINGS; STAFFING (§ 32.1-73.16)

A. The Council shall have a total membership of 21 members that shall consist of
18 nonlegislative citizen members and three ex officio members. The Governor
shall appoint a chairman and vice-chairman who shall be residents of the
Commonwealth and shall not be employed by any federal or state government.
Nonlegislative citizen members shall be appointed by the Governor and shall
include, in addition to the chairman and the vice-chairman, one representative
from an academic research institution in the Commonwealth that receives any
grant funding for rare disease research; one geneticist licensed and currently
practicing in the Commonwealth; one registered nurse or advanced practice
registered nurse licensed and currently practicing in the Commonwealth, with
experience in treating rare diseases; two physicians with expertise in rare
diseases who are licensed and currently practicing medicine in the Commonwealth;
one hospital administrator, or his designee, from a hospital in the Commonwealth
that provides care to persons diagnosed with rare diseases; two persons who are
18 years of age or older who have been diagnosed with a rare disease; two
caregivers of persons with a rare disease; two representatives of rare disease
patient organizations operating in the Commonwealth; one licensed pharmacist
with experience with drugs used to treat rare diseases; one representative from
the biopharmaceutical industry; one representative from health plan companies;
and one member from the scientific community who is engaged in rare disease
research, which may include a medical researcher with experience conducting
research on rare diseases. The Commissioner of Health, the Director of the
Department of Medical Assistance Services, and the Superintendent of Public
Instruction, or their designees, shall serve ex officio with nonvoting
privileges. Ex officio members of the Council shall serve terms coincident with
their terms of office.
			Nonlegislative citizen members of the Council shall be citizens of the
Commonwealth. Appointments to fill vacancies, other than by expiration of a
term, shall be for the unexpired terms. Vacancies shall be filled in the same
manner as the original appointments. After the initial staggering of terms,
nonlegislative citizen members shall be appointed for a term of three years.
			Ex officio members of the Council shall serve terms coincident with their
terms of office. Appointments to fill vacancies, other than by expiration of a
term, shall be for the unexpired terms. Vacancies shall be filled in the same
manner as the original appointments. After the initial staggering of terms,
nonlegislative citizen members shall be appointed for a term of four years.

B. The Council shall meet quarterly and the chairman and vice-chairman shall
establish a meeting schedule on an annual basis. A majority of the members shall
constitute a quorum.

C. Members of the Council shall serve without compensation or reimbursement.

D. The Department of Health shall provide staff support to the Council. All
agencies of the Commonwealth shall provide assistance to the Council, upon
request.

HISTORY: 2021, Sp. Sess. I, c. 303.