KRS 211.576: Kentucky Rare Disease Advisory Council -- Administration by eligible

entity -- Chair, vice chair, members -- Procedures -- Grants.

(1) The Kentucky Rare Disease Advisory Council is hereby established to advise the

General Assembly and state dep artments, agencies, commissions, authorities, and

private institutions that provide services for individuals diagnosed with a rare

disease.

(2) 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.

(3) An eligible entity shall be a nonprofit organization as defined by 26 U.S.C. sec. 501

that operates within Kentucky and has e xperience working in the field of rare

diseases.

(4) 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.

(5) Upon their initial appointment, the chair and vice chai r of the council shall appoint

other members of the council.

(6) 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.

(7) 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 c hair 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 rep laced. A majority of the council

members shall constitute a quorum for the purposes of conducting business.

(8) After members are appointed to the council, the council shall apply for, and accept,

any grant of money from the federal government, private fou ndations, or other

sources that may be available for programs related to rare diseases.