An Act To Establish the Rare Disease Advisory Council
Maine Legislature, Session 130, LD 0972
Committee: Health and Human Services
Sponsors: CRAVEN
Amends: 5 MRSA §12004-I, 22 MRSA §1700-B

Legislative Document
No. 972
H.P. 718
House of Representatives, March 9, 2021
An Act To Establish the Rare Disease Advisory Council
Reference to the Committee on Health and Human Services suggested and ordered printed.
ROBERT B. HUNT
Clerk
Presented by Representative CRAVEN of Lewiston.
Be it enacted by the People of the State of Maine as follows:
Sec. 1.  5 MRSA §12004-I, sub-§48-A is enacted to read:
48-A.   
Human 
Services: 
Public Health 
Rare Disease Advisory Council
Expenses Only
MRSA 
§1700-B
Sec. 2.  22 MRSA c. 277 is enacted to read:
CHAPTER 277
RARE DISEASES
§1700-B.  Rare Disease Advisory Council
1.  Advisory board established.  The Rare Disease Advisory Council, as established 
in Title 5, section 12004-I, subsection 48-A and referred to in this section as "the council," 
advises the commissioner and provides information to the public on issues regarding rare 
diseases.  As used in this section, unless the context otherwise indicates, "rare disease" 
means a condition or illness that affects fewer than 200,000 persons in the United States.
2.  Membership.  The council consists of 14 members appointed by the commissioner 
as follows: 
A.  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;
B.  Two registered nurses who provide care to patients with rare diseases;
C.  Two administrators of hospitals that provide care to patients with rare diseases, or 
their designees;
D.  One representative of the department who provides education concerning rare 
diseases or the management of chronic conditions;
E.  One representative of the department who is responsible for epidemiology services;
F.  Two persons over 18 years of age who have suffered from or currently suffer from 
a rare disease;
G.  Two parents or guardians who each have a child with a rare disease; and
H.  One representative of an organization dedicated to providing services to patients 
suffering from rare diseases.
The council may, by affirmative vote of a majority of its members, request that the 
commissioner appoint to the council additional temporary members who have expertise on 
issues studied by the council. Such members serve for a period determined by the council.
3.  Terms; quorum; meetings.  Members serve for a term of 3 years and elect a chair 
from among the members.  At the end of a term an outgoing member serves until a 
successor has been appointed.  A member may serve multiple terms.  The board shall meet 
at least once every 3 months to conduct business and to elect officers.  A quorum is 8 
members.  The affirmative vote of a majority of the members present is necessary to decide 
any business brought before the board.
4.  Staff support.  The department shall provide such administrative support to the 
council as necessary to carry out the duties of the council.
5.  Duties of council.  The council shall:
A.  Perform a statistical and qualitative examination of the incidence, causes and 
economic burden of rare diseases in the State;
B.  Receive and consider reports and input concerning rare diseases from the 
department and persons whose work relates to rare diseases, including community-
based organizations, providers of health care and local and national organizations;
C.  Increase awareness of the burden caused by rare diseases in the State;
D.  Identify evidence-based strategies to prevent and control rare diseases;
E.  Determine the effect of delayed or inappropriate treatment on the quality of life for 
patients suffering from rare diseases and on the economy of this State;
F.  Study the effect of early treatment for rare diseases on the quality of life for patients 
suffering from rare diseases, the provision of services to such patients and 
reimbursement for such services;
G.  Increase awareness among providers of health care of the symptoms of and care for 
patients with rare diseases;
H.  Evaluate the systems for delivery of treatment for rare diseases in place in the State 
and develop recommendations to increase the survival rates and quality of life of 
patients with rare diseases;
I.  Determine effective methods of collecting data concerning cases of rare diseases in 
the State to conduct epidemiological studies of rare diseases in the State;
J.  Establish a comprehensive plan for the management of rare diseases in the State, 
which must include recommendations for the department, public and private 
organizations and businesses and for potential sources of funding, and update the 
comprehensive plan as necessary;
K.  Develop a registry of rare diseases diagnosed in the State to determine the genetic 
and environmental factors that contribute to such rare diseases; and
L.  Compile an annual report, which must include, without limitation, a summary of 
the activities of the council and any recommendations of the council for legislation or 
other policies.  The council shall: 
(1)  Post the report on a publicly accessible website maintained by the department; 
and
(2)  Submit the report to the Governor and the commissioner and to the Executive 
Director of the Legislative Council for transmittal to the Legislature.
SUMMARY
This bill creates the Rare Disease Advisory Council to advise the Department of Health 
and Human Services and the public on issues regarding rare diseases.  The bill defines a 
rare disease as a disease that affects fewer than 200,000 persons in the United States.  The 
council is made up of 14 members, who are health care professionals and others involved 
with or affected by rare diseases.  The council is directed to study a variety of issues 
regarding rare diseases and their treatment within the State.  The council must submit an 
annual report to the Governor, the Commissioner of Health and Human Services and the 
Legislature and must post the report on a publicly accessible website.