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211.576 Kentucky Rare Disease Advisory Council -- Administration by eligible
entity -- Chair, vice chair, members -- Procedures -- Grants.
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The Kentucky Rare Disease Advisory Council is hereby established to advise the
General Assembly and state departments, agencies, commissions, authorities, and
private institutions that provide services for individuals diagnosed with a rare
disease.
In order to reduce the administrative burden on state agencies, the council
authorized under KRS 211.576 to 211.578 shall be administered by an existing
eligible entity operating within the state defined in subsection (3) of this section.
An eligible entity shall be a nonprofit organization as defined by 26 U.S.C. sec. 501
that operates within Kentucky and has experience working in the field of rare
diseases.
The Governor or his or her designee shall appoint a chair and vice chair to the
advisory council to serve for an initial term of two (2) years.
Upon their initial appointment, the chair and vice chair of the council shall appoint
other members of the council.
Upon their initial appointment, the chair and vice chair of the council shall develop
and submit to the Governor and the General Assembly a written description of the
intended mission of the council, including any state agencies and legislative
committees it intends to advise.
After the initial appointments, the Kentucky Rare Disease Advisory Council shall
determine its procedures governing membership and participation, with the
following exceptions:
(a) The total council membership shall not exceed twenty (20) members;
(b) All future appointed members to the council shall be approved by a majority
vote of existing members;
(c) All existing and future members of the council, including the chair and vice
chair, shall serve terms of two (2) years, beginning on the day of the
Governor's appointment, shall be eligible to succeed themselves, and shall
serve until their successors are appointed; and
(d) Members of the council shall serve until replaced. A majority of the council
members shall constitute a quorum for the purposes of conducting business.
After members are appointed to the council, the council shall apply for, and accept,
any grant of money from the federal government, private foundations, or other
sources that may be available for programs related to rare diseases.
Effective: June 27, 2019
History: Created 2019 Ky. Acts ch. 32, sec. 1, effective June 27, 2019.
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