DEPARTMENT OF HEALTH AND HUMAN SERVICES
New Hampshire Rare Disease Advisory Council
126-A:79 New Hampshire Rare Disease Advisory Council Established.
I. There is hereby established the New Hampshire rare disease advisory council.
II. (a) The advisory council shall consist of the following members:
(1) Two members of the house of representatives, appointed by the speaker of the house of representatives.
(2) One member of the senate, appointed by the senate president.
(3) The commissioner of the department of health and human services, or designee.
(4) A physician licensed under RSA 329, appointed by the New Hampshire Medical Society.
(5) An APRN, appointed by the New Hampshire Nurse Practitioner Association.
(6) A representative of the New Hampshire Hospital Association, appointed by the association.
(7) A representative from a health insurer issuing policies in New Hampshire, appointed by the governor.
(8) One parent or guardian of a youth with a rare disease, appointed by the governor.
(9) Two adult persons living with a rare disease that is distinct from each other's and from that of the person appointed in subparagraph (8), appointed by the governor.
(10) A physician or medical researcher specializing in a rare disease who for the first 3-year term shall be a medical expert in amyotrophic lateral sclerosis, appointed by the New Hampshire Medical Society.
(b) The council may solicit information from any person or entity the advisory council deems relevant to its quest.
III. Terms of office shall be for 3 years, except that legislative members shall serve the terms coterminous with their terms of office. No member shall serve more than 2 full consecutive terms.
IV. Members shall elect annually from among their number a chairperson and such other officers as they may determine necessary.
V. Legislative members of the advisory council shall receive mileage at the legislative rate.
VI. The advisory council shall:
(a) Advise the legislature and the department of health and human services on rare diseases in New Hampshire.
(b) Coordinate with other states' rare disease advisory bodies, community-based organizations, and other public and private organizations for the purpose of ensuring greater cooperation between state and federal activities encouraging research, diagnosis, and treatment of rare diseases. Federal agencies may include, but are not limited to, the National Institutes of Health, and the United States Food and Drug Administration.
(c) Explore existing data on rare diseases in New Hampshire collected by the department of health and human services.
(d) Encourage public awareness regarding rare diseases in New Hampshire.
VII. The advisory council shall submit an annual report detailing its findings, including recommendations for legislation, commencing on or before December 1, 2020, to the governor, the speaker of the house of representatives, the president of the senate, the commissioner of the department of health and human services, and the oversight committee on health and human services, established in RSA 126-A:13.
Source. 2019, 24:1, eff. July 14, 2019.