Section 26:2AA-8 - New Jersey Rare Disease Advisory Council, establishedThere is established the New Jersey Rare Disease Advisory Council in the Department of Health which shall advise the Legislature, State departments, agencies, commissions, and authorities, and private agencies providing services for persons diagnosed with a rare disease.
a. The advisory council shall consist of 20 members as follows: (1) the Commissioners of Banking and Insurance, Health, Human Services, and the Executive Director of the New Jersey Office on Minority and Multicultural Health, or their designees, as ex officio members;(2) two members of the public, one of whom shall be appointed by the Governor upon recommendation of the President of the Senate, and one of whom shall be appointed by the Minority Leader of the Senate which public members shall be any of the following: an epidemiologist, a registered nurse or nurse practitioner licensed to practice in this State with experience in providing care to patients with rare diseases, or a pediatrician or other physician licensed to practice in this State with expertise in providing care to patients with rare diseases;(3) two members of the public, one of whom shall be appointed by the Governor upon recommendation of the Speaker of the General Assembly, and one of whom shall be appointed by the Minority Leader of the General Assembly which public members shall be any of the following: an epidemiologist, a registered nurse or nurse practitioner licensed to practice in this State with experience in providing care to patients with rare diseases, or a pediatrician or other physician licensed to practice in this State with expertise in providing care to patients with rare diseases; and(4) 12 public members to be appointed by the Governor, who shall include: one physician licensed to practice in this State who has expertise in treating patients with rare diseases, and is associated with the research department of an academic institution in this State; a representative of general hospital or hospital system in this State recommended by the New Jersey Hospital Association; a representative of federally qualified health center in this State recommended by the New Jersey Primary Care Association; a geneticist licensed to practice in this State; a genetic counselor who has experience in providing services to persons diagnosed with a rare disease, their families, or their caregivers or care partners; a representative of the health insurance industry recommended by the New Jersey Association of Health Plans; a representative of the biotechnology industry or pharmaceutical industry who has expertise in rare diseases recommended by BIO NJ; a pharmacist licensed in this State who has expertise in rare diseases; a representative of the medical technology industry who has expertise in rare diseases and is recommended by the HealthCare Institute of New Jersey; one representative of a rare disease patient advocacy organization; one person, age 18 years or older, who has a rare disease; and one caregiver or care partner for a patient or partner with a rare disease.b. Public members of the advisory council shall serve for a term of three years, except that of the initial appointments, five public members shall serve for one year, five public members shall serve for two years, and six public members shall serve for three years. Vacancies in the membership of the council shall be filled in the same manner as the original appointments were made. The public members of the council shall serve without compensation but may be reimbursed for traveling and other miscellaneous expenses necessary to perform their duties within the limits of funds made available to the council for its purposes.c. The advisory council shall organize as soon as practicable after the appointment of a majority of its public members, and the Governor shall select a chairperson and vice-chairperson from among its members. The chairperson shall appoint a secretary who need not be a member of the council.d. The advisory council shall meet a minimum of three times a year but may meet more often at the call of its chair. The council may hold hearings at the times and in the places it deems appropriate and necessary to fulfill its charge. The council shall be entitled to call to its assistance, and avail itself of the services of the employees of, any State, county, or municipal department, board, bureau, commission, or agency as it may require and as may be available to it for its purposes.e. The Department of Health shall maintain oversight of the advisory council and may delegate the administration thereof to a State research university or institution with expertise in either the clinical treatment of rare disease patients, research of rare diseases, or health care policy pertaining to rare disease patients. The Department of Health may issue a request, within 180 days after the effective date of this act, for proposals for a location for the advisory council to operate and for staff and resources to support the operations of the council. The Department of Health shall provide staff services to the advisory council if the proposals submitted to the department are not sufficient to meet the needs of the council.Added by L. 2021, c. 135,s. 2, eff. 6/30/2021.