1. The Rare Disease Advisory Council is hereby created within the Department of Health and Human Services. The Council consists of:

(a) The Chair of the State of Nevada Advisory Council on Palliative Care and Quality of Life created by NRS 232.4855 or his or her designee; and

(b) The following members appointed by the Director:

(1) Not more than three physicians who practice in the area of cardiology, emergency care, neurology, oncology, orthopedics, pediatrics or primary care and provide care to patients with rare diseases;

(2) Two registered nurses who provide care to patients with rare diseases;

(3) Not more than two administrators of hospitals that provide care to patients with rare diseases or their designees;

(4) One representative of the Division who provides education concerning rare diseases or the management of chronic conditions;

(5) The employee of the Division who is responsible for epidemiology services;

(6) Two persons over 18 years of age who have suffered from or currently suffer from a rare disease;

(7) Two parents or guardians who each have experience caring for a child with a rare disease;

(8) One representative of an organization dedicated to providing services to patients suffering from rare diseases in northern Nevada; and

(9) One representative of an organization dedicated to providing services to patients suffering from rare diseases in southern Nevada.

2. The Council may, by affirmative vote of a majority of its members, request the Director to appoint to the Council additional members who have expertise on issues studied by the Council. Such members serve for a period determined by the Council.

3. A vacancy in the membership of the Council must be filled in the same manner as the initial appointment.

4. The members of the Council serve without compensation and are not entitled to the per diem and travel expenses provided for state officers and employees generally.

5. Each member of the Council who is an officer or employee of this State or a political subdivision of this State must be relieved from his or her duties without loss of regular compensation so that the officer or employee may prepare for and attend meetings of the Council and perform any work necessary to carry out the duties of the Council in the most timely manner practicable. A state agency or political subdivision of this State shall not require an officer or employee who is a member of the Council to make up the time the officer or employee is absent from work to carry out duties as a member of the Council or use annual leave or compensatory time for the absence.

6. The Department shall provide such administrative support to the Council as is necessary to carry out the duties of the Council.

7. The Council shall:

(a) Elect a Chair from among its members; and

(b) Meet at least once every 3 months at the times and places specified by a call of the Chair and may meet at such further times as deemed necessary by the Chair.

(Added to NRS by 2019, 1476)