An Act to Amend the Membership of the Rare Disease Advisory Council
Maine Legislature, Session 131, LD 1083
Committee: Health and Human Services
Amends: 22 MRSA §1700-B

Legislative Document
No. 1083
H.P. 678
House of Representatives, March 9, 2023
An Act to Amend the Membership of the Rare Disease Advisory 
Council
(EMERGENCY)
Reported by Representative MEYER of Eliot for the Joint Standing Committee on Health 
and Human Services pursuant to Resolve 2021, chapter 177, section 8.
Reference to the Committee on Health and Human Services suggested and ordered printed 
pursuant to Joint Rule 218.
ROBERT B. HUNT
Clerk
Emergency preamble.  Whereas, acts and resolves of the Legislature do not 
become effective until 90 days after adjournment unless enacted as emergencies; and
Whereas, a council coordinator to provide administrative support to the Rare Disease 
Advisory Council is currently being appointed and members of the council will soon be 
appointed; and
Whereas, to minimize disruption of membership and ensure that members of the 
council with direct experience of a single-gene disorder will be appointed at the beginning 
of the council's activities, this legislation must take effect immediately; and
Whereas, in the judgment of the Legislature, these facts create an emergency within 
the meaning of the Constitution of Maine and require the following legislation as 
immediately necessary for the preservation of the public peace, health and safety; now, 
therefore,
Be it enacted by the People of the State of Maine as follows:
Sec. 1.  22 MRSA §1700-B, sub-§2, ¶L, as enacted by PL 2021, c. 740, §2, is 
repealed.
Sec. 2.  22 MRSA §1700-B, sub-§2, ¶M, as enacted by PL 2021, c. 740, §2, is 
repealed.
Sec. 3.  22 MRSA §1700-B, sub-§2, ¶N, as enacted by PL 2021, c. 740, §2, is 
amended to read:
N.  One representative of an organization dedicated to providing services to persons 
with rare diseases.;
Sec. 4.  22 MRSA §1700-B, sub-§2, ¶O is enacted to read:
O.  One person 18 years of age or older who has had or has a single-gene disorder;
Sec. 5.  22 MRSA §1700-B, sub-§2, ¶P is enacted to read:
P.  One person 18 years of age or older who has had or has a rare disease that is not a 
single-gene disorder;
Sec. 6.  22 MRSA §1700-B, sub-§2, ¶Q is enacted to read:
Q.  One parent or guardian who has a child with a single-gene disorder; and
Sec. 7.  22 MRSA §1700-B, sub-§2, ¶R is enacted to read:
R.  One parent or guardian who has a child with a rare disease that is not a single-gene 
disorder.
Emergency clause.  In view of the emergency cited in the preamble, this legislation 
takes effect when approved.
SUMMARY
This bill is a recommendation from the Advisory Panel to Better Understand and Make 
Recommendations Regarding the Implications of Genome-editing Technology for the 
Citizens of the State established pursuant to Resolve 2021, chapter 177.  It changes the 
membership of the Rare Disease Advisory Council to require one of the members who is 
years of age or older with a rare disease to be a person who has or has had a single-gene 
disorder and to require one of the members who is a parent or guardian of a child with a 
rare disease to be a parent or guardian of a child with a single-gene disorder.  The members 
of the Rare Disease Advisory Council have not yet been appointed.