Montana § 2-15-2231 - Rare Disease Advisory Council -- Membership

§ 2-15-2231. Rare Disease Advisory Council -- Membership

Rare disease advisory council -- membership. (1) There is a rare disease advisory council within the department of public health and human services provided for in 2-15-2201 to provide guidance, education, and recommendations to the public, the legislature, and other government agencies on the needs of individuals with rare diseases living in Montana. (2) The council consists of 17 members, who, if possible, must be full-time residents of Montana representing the geographic and population diversity of the state as follows: (a) one representative of an academic research institution in the state that receives grant funding for rare disease research; (b) one representative of the Montana medicaid program; (c) one representative of the department of labor and industry; (d) one nurse or advanced practice registered nurse licensed and practicing in Montana with experience treating rare diseases; (e) one physician practicing in Montana with experience treating rare diseases; (f) one geneticist or genetic counselor; (g) one hospital administrator or the administrator's designee from a hospital in Montana that provides care to individuals diagnosed with rare diseases; (h) two individuals with rare diseases; (i) one caregiver of an individual with a rare disease; (j) one representative of a rare disease patient organization that operates in Montana; (k) one pharmacist with experience dispensing drugs used to treat rare diseases; (l) one representative of the biopharmaceutical industry; (m) one representative of a health plan company; (n) one representative 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; (o) one mental health provider with experience treating rare disease patients in Montana; and (p) one representative of the Montana public health laboratory. (3) (a) (i) Within 30 days after July 1, 2025, the governor shall appoint one member to serve as presiding officer of the advisory council for a 3-year term. The presiding officer may not hold a position within state government. (ii) The governor shall appoint the remaining members of the advisory council for terms of not more than 4 years. The initial appointments may specify a shorter length of the initial term in order to stagger terms. (b) At the end of the presiding officer's 3-year term and every 2 years afterward, the members of the advisory council shall elect a presiding officer by a majority vote. (c) A member of the council may be reappointed. (d) If a vacancy occurs, a new member must be appointed by the governor to fill the balance of the unexpired term. (4) Advisory council members shall serve without additional compensation but are entitled to reimbursement for travel expenses as provided for in 2-18-501 through 2-18-503 .