KRS 211.577: Duties of council -- Report -- Response -- Hearing.

(1) The Kentucky Rare Disease Advisory Council shall:

(a) Act as the advisory body on rare diseases to the General Assembly, the

Governor, and to all relevant state and private agencies that provide services

to, or are charged with the care of, individuals with rare diseases;

(b) Coordinate its duties with those community -based organizations and private -

sector institutions within the state for the purpose of ensuring greater

cooperation regarding the research, diagnosis, and treatment of rare diseases.

The coordination shall require, when appropriate:

1. Disseminating the outcomes of the advisory council's research,

identified best practices, and policy recommendations; and

2. Utilizing common research collection and dissemination procedures;

(c) Research and determine the most appropriate methods to collect thorough and

complete information on rare diseases in Kentucky and other information as

the council deems necessary and appropriate to collect;

(d) Research and identify priorities relating to the quality, co st-effectiveness, and

access to treatment and services provided to persons with rare diseases, and

develop related policy recommendations;

(e) Identify best practices for rare disease care from other states and at the

national level that may improve rare disease care in Kentucky;

(f) Develop effective strategies to raise public awareness of rare diseases in

Kentucky;

(g) Ensure tha t the duties of the council are carried out in a manner that is

coordinated and compatible with similar research being conducted at the state

and federal levels;

(h) In conjunction with the state's medical schools, the state's schools of public

health, and hospitals in the state that provide care to persons diagnosed with a

rare disease, develop a list of existing, publicly accessible resources on

research, diagnosis, treatment, and education relating to rare diseases; and

(i) Report biennially on its activ ities, findings, and recommendations relating to

the quality, cost -effectiveness, and access to treatment and services for

persons with rare diseases in Kentucky to the Governor, the Cabinet for

Health and Family Services, and the General Assembly.

(2) Upon receipt of the council's biennial report, the Governor and Cabinet for Health

and Family Services shall within ninety (90) days issue a written response to the

council detailing its efforts to improve state policies pertaining to the identification,

treatment, and care of rare diseases.

(3) Upon receipt of the council's biennial report, the Interim Joint Committee on Health

Services shall within one hundred twenty (120) days convene a hearing on issues

pertaining to the identification, treatment, and care of rare diseases identified by the

council in its report.